Published online by Cambridge University Press: 24 February 2021
The global Human Genome Project (HGP) promises dramatic advances in biomedical science and in identifying and treating diseases and illnesses that exact an enormous toll on people throughout the world. The HGP portends a conceptual revolution in health care: many foresee a new “predictive medicine” based on the development of genetic screening, testing and gene therapy.
Although advances in genetic science create the potential for dramatic progress against disease in rich and poor states, they also pose profound national and global policy concerns, including the potential impact of the scientific developments on human rights and public health. The development of more precise genetic information raises the specter of genetic discrimination by public and private sectors in all nations with access to the new technologies. In addition, nations will grapple increasingly with the appropriate balance between screening for and treatment of genetic diseases in order to promote public health and protect individual rights to privacy and confidentiality. Genetic screening and services also raise human rights questions relating to equitable resource allocation and the protection of public health.
1 See Watson, James D. & Cook-Deegan, Robert Mullan, The Human Genome Project and International Health, 263 JAMA 3322, 3322 (1990)CrossRefGoogle Scholar.
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3 See Universal Declaration on the Human Genome and Human Rights, UN Educational, Scientific and Cultural Organization [UNESCO], 29th Sess., 29 C/Resolution 19 (1997), reprinted in Records of the General Conference, UNESCO, 29th Sess., 29 C/Resolution 19, at 41 (1997) [hereinafter the Declaration],
4 gee Declan Butler, Ethics Treaty to Target Genome Implications, 274 Nature 222, 222 (1994).
5 See Georges B. Kutukdjian, UNESCO's International Bioethics Committee, Hastings Cent. Rep. Mar.-Apr. 1994, at 3, 4.
6 See Drawing Up of a Declaration on the Human Genome: A Report by the Director-General, UNESCO, 29th Sess., Prov. Agenda Item 6.2, U.N. Doc. 29 C/21 (1997).
7 See Douglas Williams, The Specialized Agencies and the UN 30-32 (1991).
8 See id. at 62-63.
9 Deoxyribonucleic acid (DNA) is the molecule that encodes genetic information. See Rosenthal, Nadia, DNA and the Genetic Code, 331 New Eng. J. Med. 39, 39 (1994)CrossRefGoogle ScholarPubMed (describing DNA as the “deceptively simple molecule [that] specifies virtually everything about the form and function of all cells and organisms”).
10 See Victor A. McKusick, The Human Genome Project Plans, Status, and Applications in Biology and Medicine, in Gene Mapping: Using Law And Ethics as Guides, at 18, 23-26 (George J. Annas & Sherman Elias eds., 1992) [hereinafter Gene Mapping].
11 See McKusick, supra note 2, at 910 (explaining that the genome represents all the genetic material in the chromosomes of an organism); A. Lippman, Led (Astray) by Genetic Maps: The Cartography of the Human Genome and Health Care, 35 Soc. Sci. & Med. 1469, 1469 (1992) (discussing the goals of the Human Genome Project (HGP) and its progress).
12 Thomas Wilkie, Perilous Knowledge: The Human Genome Project and Its Implications 3 (1993) (discussing potential problems resulting from the HGP). The HGP has not received endorsement from all scientific quarters. See Tauber, Alfred I. & Sarkar, Sahorta, The Ideology of the Human Genome Project, 86 J. Royal Soc’y Med. 537, 537 (1993)Google ScholarPubMed (suggesting that “the HGP is driven by an opportunistic technology, an avaricious lobby and misguided goals” and describing the HGP as an “imperialist agenda of a particular programme of biological research”).
13 See Organisation For Economic Co-operation and Development, The Global Human Genome Programme 10-12 (1995) (giving a historical description of the HGP initiative).
14 See id. See generally Francis Collins & David Galas, A New Five Year Plan for the U.S. Human Genome Project, 262 SCIENCE 43 (1993) (describing U.S. activities in human genome research). The U.S. national program, the U.S. Human Genome Project, is financed jointly by the National Institute of Health (NIH) and the Department of Energy and was formed to work with other nations to locate and define the sequences of all human genes. See Robin Herman, The Great Gene Gold Rush: U.S. Rankles Other Countries with Preemptive Strike in the Race to Patent Human Genes, Wash. Post, June 16, 1992, at 11. In September 1998, the U.S. Department of Energy and the NIH approved new five year goals aimed at completing the HGP with a complete and highly accurate reference sequence by 2003, two years ahead of schedule. See pletion, 10 Human Genome News 1, f 5 (Feb. 1999) <http://www.ornl.gov/hgmis/publicat/hgn/vl0nl/01goals.html>; see also Francis S. Collins et al., New Goals for the U.S. Human Genome Project 1998-2003, 282 Science 682, 685 (1998) (describing accelerated HGP activities).
15 See Nicholas Wade, Artificial Human Chromosomes is New Tool for Gene Therapy, N.Y. Times, Apr. 1, 1997, at C3.
16 See Organisation For Economic Co-operation and Development, supra note 13, at 2031.
17 See id. at 28.
18 See id. at 21-25.
19 See id. at 58.
20 See id. at 20, 64.
21 See id. at 64. The Human Genome Organization’s (HUGO) aims include assisting with the coordination of research of the human genome and, in particular, fostering collaboration among scientists with a view to avoiding unnecessary competition or duplication of effort; and coordinating and facilitating the exchange of data and biomaterials relevant to human genome research. See id. Initially, UNESCO made a bid to coordinate global scientific research on the HGP, but was persuaded to withdraw by HUGO on the grounds that international scientific coordination would best be undertaken by an organization whose exclusive purpose was the human genome and in which expertise was concentrated. See id.
22 Sheila A.M. McLean & Dieter Giesen, Legal and Ethical Considerations of the Human Genome Project, 1 Med. L. Int’L 159, 161 (1994). In May 1998, The Institute for Genomic Research announced plans to form a new private venture to sequence a large portion of the genome in three years, ahead of schedule of the public efforts. See Private-Sector Sequencing Planned, 9 Human Genome News 3,11 1 (July 1998) <http://www.oml.gov/ngmis/publicat/hgn/v9v3/01venter.html>.
23 See Mark S. Guyer & Francis S. Collins, The Human Genome Project and the Future of Medicine, 147 Am. J. Disease Children 1145, 1145 (1993).
24 Id. at 1145.
25 See Bemadine Healy, On Gene Patenting, 327 New Eng. J. Med. 664, 664 (1992). The genetic constitution of all individuals is contained in their chromosomes. See id. Each individual has 23 pairs of chromosomes, half inherited from each parent. See id.
26 Guyer & Collins, supra note 23, at 1145.
27 See Evelyne Shuster, Determinism and Reductionism: A Greater Threat Because of the Human Genome Project?, in Gene Mapping, supra note 10, at 115, 116 (arguing that the view “that human genetics is essentially deterministic and reductionist could lead to the misapplication of genetic information and foster socially dangerous ideologies,” including eugenics); see also discussion infra Part III.A.l (describing human rights implications of advances in genetic sciences); infra notes 166-73 and accompanying text (describing eugenics policies).
28 In fact, geneticists submit that each individual probably carries several mutated genes within his or her genome. See S.M. Suter, Whose Genes are These Anyway?: Familial Conflicts Over Access to Genetic Information, 91 Mich. L. Rev. 1854, 1858 (1993).
29 Genetic diseases are generally one of three kinds:
(1) [c]hromosomal disorders [which] involve the lack, excess, or abnormal arrangement of one or more chromosomes, producing excessive deficient genetic material, (2) Mendelian or simply inherited disorders [which] are determined by a single mutant gene … [or] (3) [m]ultifactorial disorders [which] are caused by an interaction of multiple genes and multiple exogenous or environmental factors.
Jean d. Wilson Et al., Principles of Internal Medicine 24 (12th ed. 1991).
30 See Nussbaum, Robert, Current Research and Future Directions or Genetic Services, in Genetic Services: Developing Guidelines for The Public Health 232, 232-33Google Scholar (Sallie B. Freeman et al. eds., 1996). In the U.S., for example, of the 184,300 new cases of breast cancer in women and the 44,300 breast cancer deaths in 1996, 5 to 10% of the cases were thought to be hereditary. See Mulvihill, John J. & Stadler, Mona P., Breast Cancer Risk Analysis and Counseling, 39 Clinical Obstetrics and Gynecology 851, 851 (1996)CrossRefGoogle ScholarPubMed.
31 See generally Kare Berg, Ethical Aspects of Early Diagnosis of Genetic Diseases, World Health Sept.-Oct. 1996, at 20 (discussing the nature of and approaches to genetic disease as well as the ethical aspects of genetic screening as a means to render an early diagnosis).
32 Shuster, supra note 27, at 116.
33 Jon Beckwith, Thinking of Biology: A Historical View of Social Responsibility in Genetics, 43 Bloscience 327, 328 (1993).
34 See Healy, supra note 25, at 664.
35 See Guyer & Collins, supra note 23, at 1149.
36 See Organisation for Economic Co-operation and Development, supra note 13, at 41.
37 See infra notes 129-34 and accompanying text (describing the limited availability of genetic screening tests for genetic disorders); see also John Savill, Science, Medicine, and the Future: Molecular Genetic Approaches to Understanding Disease, 314 Brit. Med. J. 126, 126-29 (1997) (discussing the recent improvements in disease diagnosis and treatment arising from advances in molecular genetics).
38 See Rganisation for Economic Co-operation and Development, supra note 13, at 40.
39 See Laurie, Graeme T., The Most Personal Information of All: An Appraisal of Genetic Privacy in the Shadow of the Human Genome Project, 10 Int’l J.L. Pol’y & Fam. 74, 74 (1996)CrossRefGoogle ScholarPubMed.
40 Id.
41 See infra notes 47-51 and accompanying text (enumerating the limited availability of genetic screening tests for genetic disorders).
42 See Frank P. Grad, the Public Health Law Manual 69-72 (1990) (describing circumstances under which state laws of the U.S. may require compulsory medical exams and clinical tests); see also Frank P. Grad & Ilise L. Feitshans, The Lawful Uses Of Knowledge From the Human Genome Project 292-308 (Apr. 15, 1994) (unpublished manuscript, on file with author) (providing an overview of the history of the U.S. federal and state genetic programs).
43 See Grad & Feitshans, supra note 42, at 304.
44 See id. at 352.
45 See id. at 346.
46 See Organisation for Economic Co-operation and Development, supra note 13, at 42. Globally, however, newborn and prenatal screening on a routine basis varies from country to country. See Eugene B. Brody, Biomedical Technology and Human Rights 139 (1993).
47 See Joe E. Smith, Ethical Issues Raised by the Human Genome Project, 50 Am. J. Hosp. Pharmacists 1945, 1946 (1993); Lori Whittaker, Clinical Applications of Genetic Testing: Implications for the Family Physician, 53 Am. Fam. Physician 2077, 2077 (1996).
48 See Grad & Feitshans, supra note 42, at 350; Organisation for Economic Co-Operation and Development, supra note 13, at 42.
49 See Grad & Feitshans, supra note 42, at 354-57.
50 See C. Cunningham & M.G. Dunlop, Molecular Genetic Basis of Colorectal Cancer Susceptibility, 83 Brit. J. Surgery 321, 321 (1996); Neil A. Holtzman, Are We Ready to Screen for Inherited Susceptibility to Cancer?, 10 Oncology 57, 57 (1996) (suggesting that although the discovery of gene mutations that increase the risk of cancer creates new opportunities to improve outcomes, questions remain about the contribution of genetic factors); Lisa S. Parker, Breast Cancer Genetic Screening and Critical Bioethics’ Gaze, 20 J. MED. & PHIL. 313, 331 (1995).
51 See Grad & Feitshans, supra note 42, at 357-58.
52 Nussbaum, supra note 30, at 237.
53 See Olopade, Olufunmilayo I., Genetics in Clinical Cancer Care—The Future is Now, 335 New Eng. J. Med. 1445, 1445-46 (1998)Google Scholar (describing how genetic testing has created opportunity for new medical management strategies for early detection and prevention of various cancers). “The American Society of Clinical Oncology endorses genetic testing of people who have a strong family history of cancer or very early onset disease … Id.; see also Muin J. Khoury, From Genes to Public Health: The Applications of Genetic Technology in Disease Prevention, 86 Am. J. Pub. Health 1717, 1717-20 (1996) (describing potential applications of genetic advances for core public health functions).
54 See Nicholas Wade, Meeting of Computers and Biology: The DNA Chip, N.Y. Times, Apr. 8, 1997, at Cl.
55 Id.
56 See id.
57 See id. at C6.
58 See id. at Cl.
59 See Gail Vines, Gene Tests: The Parents ’ Dilemma, New Scientist, Nov. 1994, at 40, 42; see also Neil A. Holtzman & David Shapiro, The New Genetics: Genetic Testing and Public Policy, 316 Brit. Med. J. 852, 854 (1998) (describing the therapeutic gap). The wide gap between diagnosis and treatment for disease, genetic and communicable, has raised a profound and continuing debate as to whether individuals should be tested for such diseases and whether information on disease status should be kept in data banks. See infra Part I1I.A.1 (describing human rights implications of advances in genetic science); infra note 126 (analyzing role of genetic data banks).
60 See Nicholas Wade, Artificial Human Chromosome is New Tool for Gene Therapy, N.Y. Times, Apr. 1, 1997, at C3; see also Ul Researchers Find Potential Gene Therapy for Cys tic Fibrosis (last modified Sept. 9, 1999) <http://www.eurekalert.org/release/uiowa-rfpgt.html>.
61 See C.R. Scriver, Genetic Screening, Testing and Treatment: How Far Can We Go?, 19 J. Inherited Metabolic Disorders 401, 401 (1996) (suggesting that “we have quite a way to go” before treatment of genetic diseases is widely available); see also Stephen J. Russell, Science, Medicine and the Future: Gene Therapy, 315 Brit. Med. J. 1289, 1289 (1997) (“[0]nly a handful of patients with rare conditions have benefited from gene therapy, and early optimism about this new treatment has given way to disillusionment.”). As one authority has observed, “[w]e shall detect diseases with greater and greater precision, we shall learn to predict at the preclinical or prenatal stage without being able to do anything about the cause.” Jorg Schmidtke, Who Owns the Human Genome? Ethical and Legal Aspect, 44 J. Pharm. Pharmacology 205, 209 (1992). But see supra note 53 and accompanying text (describing role of genetic testing in improving efficacy of preventative measures).
62 See Organisation For Economic Co-operation And Development, supra note 13, at 43; see also Thomas F. Lee, The Human Genome Project: Cracking The Genetic Code Of Life 15-17 (1991) (citing cystic fibrosis (cf) research as an example of the potential for genetic research to prevent disease).
63 See Organisation For Economic Co-OPERATION And Development, supra note 13, at 43; see also Marcia Barinaga, From Bench Top to Bedside, 278 Science 1036, 1036 (1997); Zarir E. Karanjawala & Francis S. Collins, Genetics in the Context of Medical Malpractice, 280 JAMA 1533, 1533 (1998); Lawrence M. Fisher, Hope Near the End of the Pipeline, N.Y. Times, May 1, 1997, at Dl.
64 See LEE, supra note 62, at 14.
65 One of the most promising gene therapy experimental efforts to date involves delivering therapeutic genes to the lungs of patients with CF. See UI Researchers Find Potential Gene Therapy for Cystic Fibrosis, supra note 60; see also Peter G. Middleton & Eric W.F.W. Alton, Gene Therapy for Cystic Fibrosis: Which Postman, Which Box?, 53 Thorax 197, 198 (1998).
66 See Winter, S.F. & Roger, H.D., Medical, Ethical and Legal Aspects of Somatic Gene Therapy, 2 Eur. J. Health L. 45, 48 (1994)Google Scholar.
67 See Tom Wilkie, Perilous Knowledge: The Human Genome Project And Its Implications 151 (1993); Fisher, supra note 63, at D6.
68 See BRODY, supra note 46, at 131.
69 As a consequence, somatic gene therapy is largely considered ethically analogous to other medical therapies. See id.
70 Among other things, the possibility of germ-line therapy has raised strong concerns about the potential misuse of this form of therapy for eugenics purposes. See infra notes 140-44 and accompanying text.
71 See Organisation For Economic Co-operation And Development, supra note 13, at 4344.
72 See id. at 44 (discussing that the majority of the approximately 70 trials of gene therapy under way in the world are for the treatment of cancers for which there is no other prospect for cure); see also Steven M. Albelda, Gene Therapy for Lung Cancer and Mesothelioma, 111 Chest 144s, 144s (1997); Peter Libby, Gene Therapy of Restenosis: Promise and Perils, 82 Circulation Res. 404, 406 (1998); Alan A. Melcher et al., Gene Therapy for Cancer-Managing Expectations, 315 Brit. Med. J. 1604, 1605 (1997); Ryuichi Morishita, Lessons from Human Arteries: How to Design a Gene Therapy Stategy for Treatment of Cardiovascular Disease, 82 Circulation Res. 1349, 1349 (1998).
73 Genetic factors play a role in some psychiatric disorders, including schizophrenia and manic depressive disorders. See Grad & Feitshans, supra note 42, at 358; see also Edward I. Ginns, et al., A Genome-Wide Search for Chromosomal Loci Linked to Mental Health Wellness in Relatives at High Risk for Bipolar Affective Disorder Among the Old Order Amish, 95 Proc. Nat’l Acad. Sci. 15531, 15531 (1998) (arguing that “[c]ompelling evidence supports a significant genetic component in the susceptibility to develop BPAD [bipolar affective disorder]”).
74 See Grad & Feitshans, supra note 42, at 358; Michael McCarthy, Gene Therapy Applied to Treatment of HIV-1 Infection, 351 The Lancet 1709, 1709 (1998).
75 In effect, “[t]he immune system that we inherited from our parents may not be adequate to ward off certain viruses if we are exposed to them … [genetic intervention] will enhance the capabilities of our immune system by priming it to fight against these viruses.” Leroy Walters & Julie Gage Palmer, The Ethics Of Human Gene Therapy 110 (1997).
76 See id. at 110.
77 See Judith Miller, Mapping and Beyond: Council for International Organizations of Medical Science Conference on the Human Genome Project, 20 Hastings Cent. Rep. 3, 3 (1990).
78 See id.
79 See Watson & Cook-Deegan, supra note 1, at 3322-23.
80 See id. at 3322.
81 See World Health Organization, World Health Report 1996: Fighting Disease Fostering Development 15 (1996) (describing infectious diseases).
82 See Watson & Cook-Deegan, supra note 1, at 3323.
83 See who, Scientific Group On The Control Of Hereditary Diseases, who Technical Report Series 865, Control Of Hereditary Diseases: Report Of A who Scientific Group 2833 (1996) [hereinafter who, Control Of Hereditary Diseases] (discussing noncommunicable diseases and DNA research).
84 See Miller, supra note 77, at 4.
85 See Who, Control Of Hereditary Diseases, supra note 83, at 17 (explaining that advances in genetic research will likely lead to the overall reduction of disease in both developed and developing nations).
86 See Alastair lies, The Human Genome Project: A Challenge to the Human Rights Framework, 27 Harv. Human Rts. J. 27, 61 (1996). But see infra Part Iii.A.2.a (suggesting that economic barriers may limit use of the new technology in developing countries).
87 WHO has argued that many countries should develop existing genetic services as part of their national health program. These genetic services are a relatively inexpensive approach to the financial burden of chronic diseases that are common in many nations. See WHO, Control of Hereditary Diseases, supra note 83, at 72.
88 See generally Douglas Bettcher & Derek Yach, The Globalization of Public Health II: The Convergence of Self-Interest and Altruism, 88 Am. J. Pub. Health 742 (1998) (describing the globalization of public health); Allyn L. Taylor, Making the World Health Organization Work: Universal Access to the Conditions for Health, 18 Am. J.L. & Med. 301 (1992) (analyzing the global interdependence of public health conditions).
89 See Taylor, supra note 88, at 306.
90 See id.; Bettcher & Yach, supra note 88, at 740.
91 See Allyn L. Taylor, Controlling the Global Spread of Infectious Diseases: Toward a Reinforced Role for the International Health Regulations, 33 Houst. L. Rev. 1327, 1335 (1997); Margaret A. Winker & Annette Flanagin, Infectious Diseases: A Global Approach to a Global Problem, 275 JAMA 245, 245 (1996). The magnitude of the recent global impact of catastrophic new diseases and the worldwide reappearance of virulent old diseases has put international communicable disease control back to the fore of the global public health agenda. Id. at 1331-38.
92 See U.s. Dep’T Of Health & Human Services, Reducing The Health Consequences of Smoking: 25 Years Of Progress 5 (1989).
93 See WHO, Facts and Figures: World No Tobacco Day 1 (1994).
94 See Andrew Skolnick, Experts at Buenos Aires Conference Predict Pandemic of Tobacco deaths, 267 Jama 3255, 3255 (1992). See generally Allyn L. Taylor, An International Regulatory Strategy for Global Tobacco Control, 21 Yale J. Int’l L. 257 (1996) [hereinafter Taylor, An International Regulatory Strategy] (analyzing the global tobacco pandemic and WHO’s international legislative strategy to address it); Allyn L. Taylor et al., Addressing the Globalization of the Tobacco Epidemic: A WHO Framework Convention on Tobacco Control, Am. J. PUB. Health (forthcoming 2000); Douglas Bettcher, The WHO Framework Convention on Tobacco Control (FCTC): An Accelerated War Plan, Paper Presented at the WHO FCTC Meeting of Public Health Experts (Dec. 2, 1998) (unpublished manuscript, on file with author) (discussing development of WHO FCTC, including current support for this international tobacco convention, a framework for an accelerated workplan and major milestones); Allyn L. Taylor & Daniel Bodansky, The Development of the WHO Framework Convention on Tobacco Control: Legal and Policy Considerations, Paper Presented at the WHO FCTC Meeting of Public Health Experts (Dec. 1998) (unpublished manuscript, on file with author) (describing the treaty-making process in the context of the framework convention on tobacco control in accordance with Article 19 of the WHO Convention). Evidence that genetic predisposition may affect the addiction to and impact of hazardous substances further evidences the important role that gene therapy and treatments could play in rich and poor states and indicates the importance of global collaborative research efforts to assess the genetic basis of addiction and disease susceptibility. Interview with Frank Grad, Professor at Columbia University (Apr. 21, 1997).
95 A recent comprehensive global study confirms that the health problems of poor nations are increasingly converging with the health problems of rich states. See The Global Burden Of Disease: A Comprehensive Assessment Of Mortality And Disability From Diseases, Injuries, And Risk Factors In 1990 And Projected To 2020; Summary 1 (christopher J.l. Murray & Alan D. Lopez eds., 1996). The researchers found that the incidence of noncommunicable diseases is increasing in developing nations and replacing infectious diseases and malnutrition as one of the leading causes of premature morbidity and mortality globally. The changing pattern is caused by factors including the aging populations and, most important, the growing use of tobacco in developing states. See id. at 1; see also Taylor, An International Regulatory Strategy, supra note 94, at 257, 260-64.
96 See Dorothy C. Wertz & John C. Fletcher, Proposed: An International Code of Ethics for Medical Genetics, 44 Clinical Genetics 37, 37 (1993); Holtzman & Shapiro, supra note 59, at 85355. Several disciplinary approaches can be used to clarify the international legal and social aspects of advances in genetic science. One common method of examination involves focusing on the ethical framework provided by bioethics. See, e.g., Zbigniew Bankowski, Ethics and Health, World Health, Apr. 1989, at 2, 3-4.
97 George J. Annas & Sherman Elias, The Major Social Policy Issues Raised by the Human Genome Project, in Gene Mapping, supra note 10, at 3, 7.
98 Autonomy has acquired diverse meanings in the biomedical context including self-governance, liberty rights, privacy, individual choice and freedom of the will. See Tom L. Beauchamp & James F. CHILDRESS, PRINCIPLES of BIOMEDICAL ETHICS 120 (4th ed, 1994). Virtually all theories of autonomy in the biomedical context emphasize respect for autonomous choices by others and agree that two conditions are essential: (1) liberty (independence from controlling influences) and (2) agency (capacity for independent action). See id. at 120-21. However, there is broad disagreement over the meaning of the two conditions and their implications. See id. at 121. The principle of autonomy is central to human rights law. As Louis Henkin has observed, “[i]n sum, the idea of human rights is that the individual counts … [a]utonomy and liberty must be respected … .” LOUIS HENKIN, THE AGE OF RIGHTS 4 (1991).
99 See Grad & Feitshans, supra note 42, at 63-72. The concept of privacy in the genetics context has various implications. See id. The core notion is the right to control information about oneself. See id. at 67. Privacy interests arise in generating, collecting, storing and disseminating genetic data. See id. at 67-68. Whether a singular or a composite right, the right to genetic privacy is not absolute. See id. at 70; BEAUCHAMP & Childress, supra note 98, at 127 (describing privacy as a component of autonomy); see also Ruth Macklin, Privacy and Control of Genetic Information, in GENE MAPPING, supra note 10, at 157, 158-59.
100 xhe basic paradigm of autonomy in health care is express and informed consent. See Beauchamp & Childress, supra note 98, at 128. See infra note 201 and accompanying text (describing right to informed consent in international human rights law).
101 See Lawrence O. Gostin, Genetic Discrimination: The Use of Genetically Based Diagnostic and Prognostic Tests by Employers and Insurers, 17 AM. J.L. & MED. 109, 110 (1991). See generally Roberta M. Berry, The Human Genome Project and the End of Insurance, 7 U. FLA. J.L. & PUB. POL’Y 205 (1996) (describing how the HGP will revolutionize the insurance industry and threaten access to insurance for many because it will enable insurers to adapt the extent of available coverage and premiums according to increasingly pinpointed factors); Dan W. Brock, The Human Genome Project and Human Identity, 29 HOUS. L. REV. 7 (1992) (arguing that the HGP will adversely affect equality of opportunity with respect to employment); Lawrence O. Gostin, Genetic Privacy, 23 J.L. Med. & Ethics 320 (1995) (examining the privacy aspects of genetic information); Laurie, supra note 39 (examining genetic information in the familial context); Harry Osterer, Insurance and Genetic Testing: Where Are We Now?, 52 Am. J. Human Genetics 563 (1993) (examining the potential impact of genetic information on the insurance industry); Mark A. Rothstein, Genetic Discrimination in Employment and the Americans with Disabilities Act, 29 HOUS. L. REV. 23 (1992) (analyzing genetic discrimination in employment under the Americans with Disabilities Act and concluding that changes in employment law and the health benefits system may be needed to eliminate the prospect of widespread discrimination); Mark A. Rothstein, Genetic Testing: Employability, Insurability and Health Reform, 17 J. NAT’L Cancer Inst. Monographs 87 (1995) (analyzing how a major consideration in issues of genetic testing and employability or insurability is the existing relationship among health insurance, health status and employment).
102 See lies, supra note 86, at 32; see also Health Discrimination: British Insurers Might be Misusing Genetic Information, Chi. Trib., Dec. 21, 1998, at C7 (describing how Britain’s first study on genetic information in life insurance revealed that Britons from families with a history of genetic disorders have been subject to discrimination).
103 See Pamela Sanker, Topics of Our Times: The Proliferation and Risks of Government DNA Databases, 87 Am. J. Pub. Health 336, 337 (1997); Laurie, supra note 39, at 77-78 (indicating that genetic tests are of limited efficacy because they “can neither predict the particular likelihood of the onset of a condition, nor the date when the disease will develop nor the severity of the condition which any one individual is likely to experience”). Others suggest that institutions, such as insurance companies, may inappropriately utilize genetic information to overestimate personal risk. See Brody, supra note 46, at 137.
104 See Holtzman & Shapiro, supra note 59, at 854.
105 See Watson & Cook-Deegan, supra note 1, at 3323 (describing how some populations in the Middle East, Africa and Asia that have been isolated by geography and limited technology constitute a valuable resource to HGP researchers).
106 gee Marcia Angell, Ethical Imperialism? Ethics in International Collaborative Clinical Research, 16 New Eng. J. Med. 1081, 1082 (1988) (advocating the majority perspective that the concept of informed consent is not a relative concept and should be applied in all international research protocols). But see Michele Barry, Ethical Considerations of Human Investigation in Developing Countries: The AIDS Dilemma, 319 New Eng. J. Med. 1083, 1083-84 (suggesting that the culturally relative principles of bioethics should guide research practices on informed consent).
107 See Malinowski, Michael J., Coming Into Being: Law, Ethics and the Practice of Prenatal Genetic Screening, 45 Hastings L.J. 1435, 1485 (1994)Google ScholarPubMed (discussing the interplay between increasing technological capabilities in genetic screening and reproductive decisions); C. Alonso, Ethical Reflections Concerning Genetic Services: A Paradigm for the Future?, 19 J. Inherited Metabolic Disorder 424,427-28 (1996).
108 See supra notes 43-46 and accompanying text (describing prenatal genetic tests).
109 See Grad & Feitshans, supra note 42, at 383, 399.
110 From a bioethics perspective, “procreative liberty—the freedom to make decisions to beget, bear and rear offspring—is a deeply held value and central component of most theories of personal autonomy.” John A. Robertson, The Potential Impact of the Human Genome Project for Procreative Liberty, in Gene MAPPING, supra note 10, at 215, 215.
111 The potential for abuse of genetic counseling is a prominent area of national and international concern. Genetic counseling involves the communication of information in a way that allows the individual patient to make a decision autonomously. In contrast, directive counseling involves the counselor directing the deliberations and decisions. The dominant global consensus is that international human rights and ethics demand that genetic counseling should be nondirective. See M. Michel Revel, Draft Report on Genetic Counseling, UNESCO, 3d Sess. at 2 (1995) (reviewing state law and practice on genetic counseling); WHO, Division of Noncommunicable Diseases, Human Genetics, Genetic Counseling; Principles and Policies in Health Care; Position Paper 8, at 6 (1995); see also Olivier De Dinechin et al., Workshop on the Commission of the European Communities on Ethics of Human Genome Analysis: Survey of the European Discussion, 30 J. Med. Genetics 257, 259 (1993) (describing the perspective of European Community bioethicists that nondirective genetics counseling is the “gold standard” and that genetics testing procedures should not be permitted without such counseling).
112 See WHO, Informal Listing (Partially Annotated) of Laws, Regulations, Guidelines, etc. on Genetic Screening/Testing, Gene Therapy and Other Aspects of Human Genetics 14 (1996) [hereinafter WHO, Genetics Laws and Guidelines].
113 See id. at 21.
114 See Brody, supra note 46, at 148; Robert N. Proctor, Genomics and Eugenics: How Fair is the Comparison?, in Gene Mapping, supra note 10, at 57, 57-72.
115 See Patricia King, The Past as Prologue: Race, Class and Gene Discrimination, in Gene Mapping, supra note 10, at 94, 95; Judith P. Swazey, Those Who Forget Their History: Lessons from the Recent Past for the Human Genome Quest, in GENE MAPPING, supra note 10, at 45, 50.
116 See King, supra note 115, at 99-100; see also Holtzman & Shapiro, supra note 59, at 852 (describing how exaggerated claims are made for genetic testing despite the major difficulties of predicting diseases accurately).
117 See Greely, Henry T., The Control of Genetic Research: Involving the ‘Groups Between’, 33 Hous. L. Rev. 1397, 1408-11 (1996)Google Scholar. Henry Greely points out that genetics research is likely to focus on families or groups of families with a high incidence of a particular genetic disease. See id. at 1410. These groups of people are defined not by citizenship but by common ties of heredity, including family, disease and ethnicity. See id. at 1411.
118 See Mary B. Mahowald et al., The New Genetics and Women, 74 Milbank Q. 239, 241 (1996) (describing how political and social pressures may be brought on women who are carriers of genetic diseases); see also Allyn L. Taylor, Women's Health at a Crossroad: Global Responses to HIV/AIDS, 4 Health Matrix 297, 316-17 (1994) (describing how disease status can exacerbate stigmatization of women globally). See generally Robertson, supra note 110 (describing the impact of the human genome project on procreative rights).
119 See King, supra note 115, at 100.
120 See id. at 100-01.
121 See Hurst Hannum, Minorities, Indigenous Peoples, and Self-Determination, in Human Rights: an Agenda for the Next Century 1, 3 (Louis Henkin & John Lawrence Hargrove eds., 1994).
122 Organisation for Economic Co-operation and Development, supra note 13, at 45. See Hannum, supra note 121, at 3.
123 See Hannum, supra note 121, at 3 (discussing the Genocide Convention’s concern with the occurrence of genocide merely for being a member of a national, ethnic or religious group).
124 See Annas & Sherman, supra note 10, at 6-10.
125 See Wade, supra note 54, at C6.
126 The fact that cures and treatments are not available for many genetic disorders has led many to the mistaken notion that individuals should not be tested for many genetic diseases. As described above, genetic screening programs can advise on lifestyle changes that can affect the impact of genetic disorders or prevent disease when the test reveals predispositions. In addition, widespread genetic screening can contribute to the discovery of treatments and cures. See discussion supra Part II.B.2. The use of widespread screening for genetics research has raised issues about privacy and genetic data banks. See Eric T. Juengst, Human Genome Research and the Public Interest: Progress Notes from an American Science Policy Experiment, 54 AM. J. Hum. Genetics 121, 125 (1994). However, genetic data banks are the most significant resource for genetics research and can contribute to scientific investigation and discovery of modalities to treat genetic conditions. See Grad & Feitshans, supra note 42, at 109-36. Consequently, security of the genetic information contained about individuals in such data banks is a central issue. See id. at 103-04; see also UNESCO, INT’L Workshop on Legal Systems for the Protection of the Results of Genetic Research at 9, U.N. Doc. UNESCO/CLT/BCR/CIP.BIO/3, UN Sales No. DRG.95/WS.4 (1995) (describing the increasing number of genetics data banks globally). Protection of confidential information extends to inappropriate access to DNA databases developed by the national militaries or criminal justice systems. See Juengst, supra at 125.
127 Developments and possibilities flowing from advances in genetic science pose other implications of critical international concern, particularly the commercialization of genetics research and technology. For example, international cooperation is essential to alleviate national barriers to international scientific collaboration and to promote freedom of research among and within states. Conflicts among national legal frameworks on patent ability and commercialization of the products and processes flowing from the HGP can, however, impede scientific advancement and necessitates efforts to promote harmonization of national patent laws to further scientific research. See Brody, supra note 46, at 39-62. Extensive analysis of commercialization issues are beyond the scope of this Article. However, there is widespread global debate as to whether patents should be granted to genome discoveries or only to genome processes. “Prohibition of patenting of human genes is advocated on grounds ranging from theological claims for the sanctity of human DNA to claimed moral imperatives to protect the human genome from commercial avarice and to safeguard society against perceived discriminatory and eugenic threats from modem genetics.” George Poste, The Case for Genomic Patenting, 378 NATURE 534, 534 (1995).
128 See lies, supra note 86, at 45-48.
129 See Grad & Feitshans, supra note 42, at 273. In particular, some authorities argue that public health services should “assist persons with genetic conditions and traits to obtain appropriate testing and screening and to obtain the help necessary for them to make well-informed choices regarding their own health and regarding the health of their families and children.” ld. see also Khoury, supra note 53, at 1717 (arguing that the public health community needs to ensure the development of public health genetics programs and noting that others, including the Institute of Medicine, have suggested that genetic services are outside the paradigm of public health).
130 jane s. Lin-Fu, The Human Genome Project: A Challenge to Public Health, in Genetic Services: Developing Guidelines for the Public’s Health, supra note 30, at 1.
131 See Proctor, supra note 114, at 68-69.
132 See supra notes 79-85 and accompanying text (describing the potential role of genetics services in community health programs in developing nations).
133 See WHO, Control of Hereditary Diseases, supra note 83, at 66.
134 WHO reports that while life expectancy is increasing in most developed states, it is actually shrinking in some of the poorest nations. See WHO, THE World Health Report 1995 1-2 (1995); see also Worldwide, People Live Longer, Often in Poor Health, UN Says, N.Y. Times, May 5, 1997, at A5; Taylor, supra note 88, at 304-09.
135 Numerous binding and nonbinding international agreements confirm the rights of all persons to enjoy the benefits of scientific and technological progress. See Report of the World Conference on Human Rights, Vienna Declaration and Programme of Action, UN GAOR, 48th Sess., 22nd mtg., pt. I, at 24, U.N. Doc. A/Conf.157/24 (1993), reprinted in 32 I.L.M. 1661, 1667 (1993) [hereinafter Vienna Declaration] (finding that “[e]veryone has the right to enjoy the benefits of scientific progress and its applications.”); see also infra notes 205-207 and accompanying text (describing relevant provisions of the International Covenant on Economic, Social and Cultural Rights (ICESCR)).
136 For an extensive analysis of the benefits and ethical implications posed by germ-line and somatic gene therapy, see generally, WALTERS & PALMER, supra note 75.
137 See Miller, supra note 77, at 5. In 1990, the Council for International Organizations in Medical Science concluded that the option of germ-line gene therapy should remain open. See id. Germ-line therapy may also be effective in clinical situations where somatic gene therapy would not, including instances where multiple organs must be treated simultaneously. See id.
138 See Brody, supra note 46, at 149; Miller, supra note 77, at 5.
139 See Walters & Palmer, supra note 75, at 111, 119-21. Scientists have discovered the gene responsible for limiting muscle growth in mice. See Denise Grady, A Lab Breeds a Mighty Mouse with a Variety of Implications, N.Y. TIMES, May 1, 1997, at B14. The removal of the gene has enabled researchers to propagate a new breed of mice with more than twice the normal amount of muscles. Scientists report that the discovery of the gene could lead to eventual treatments for people with muscle diseases. See id.
140 “That is, the remarkable successes of genetics in approaching a number of biological and medical problems have been translated into a view in which genetics is the strategy of choice in biology and the explanatory framework for society’s medical and social problems.” Beckwith, supra note 33, at 330.
141 See McLean & Giesen, supra note 22, at 167 (arguing that “[gjenetic science facilitates the collection and storage of vast quantities of sensitive information about individuals which in turn provides a growing potential for the manipulation of human reproduction and the elimination of all human differences.”); see also Brody, supra note 46, at 150 (describing how some critics speculate about the possibility that future societies may utilize genetic engineering to perpetuate the creation of individuals with the characteristics considered desirable by those in power).
142 See WHO, Genetics Laws and Guidelines, supra note 112, at 13.
143 See id. at 30.
144 See Council of Europe, Convention for the Prot the Human Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, E.T.S. No. 164 (visited Oct. 23, 1999) <http://www.coe.fr/eng/legaltxt/164e.htm> (permitting modification of the human genome for “preventative, diagnostic or therapeutic purposes and only if its aim is not to introduce any modification in the genome of any descendants.”).
145 The cloning of the lamb by Ian Wilmut was the first creation of a cloned animal from an adult. See Michael Specter & Gina Kolata, After Decades and Many Missteps, Cloning Success, N.Y. TIMES, Mar. 3, 1997, at Al. The lamb cloning was followed by eight calves that were cloned from the somatic cells of an adult cow. See Yoku Kato et al., Eight Calves Cloned from Somatic Cells of a Single Adult, 282 SCIENCE 2095, 2095 (1998).
146 See Gina Kolata, With Cloning of a Sheep, The Ethical Ground Shifts, N.Y. TIMES, Feb. 24, 1997, at 1. Experts suggest, however, that the cloning of the lamb does not portend human cloning. See George Johnson, Don't Worry. A Brain Still Can’t be Cloned, N.Y. TIMES, Mar. 2, 1997, at 4(1); see also Dennis Livingston, Science, Technology and International Law: Present Trends and Future Developments, in 4 the Future of the International Legal Order: the Structure of the International Environment 68, 94 (Cyril E. Black & Richard Falk, eds., 1972) (suggesting that the potential cloning of human beings raises international security concerns and calls for international dialogue because the genetic alteration of the human body could have military implications).
147 See Federico Mayor Rules out Human Cloning, UNESCO NEWS, (UNESCO, New York, N.Y.), Feb. 28, 1997, U.N. Doc. OPI/NYO/97-3B; BRODY, supra note 46, at 149. In 1998, European nations adopted the first international ban on human cloning in a protocol to the Convention on Human Rights and Biomedicine. See supra note 186 and accompanying text. See Council of Europe, Additional Protocol to the Convention for th ty of the Human Being with Regard to the Application of Biology and Medicine, on the Prohibition of Cloning Human Beings, E.T.S. No. 168 (visited Oct. 26, 1999) <http://www.coe.fr/eng/legaltxt/168e.htm.> (as of the date of publication of this Article, neither the Convention nor the protocol have entered into force); see also Declan Butler, Europe Brings in First International Ban, 391 NATURE 219, 219 (1998). Other public international organizations and professional organizations that have rejected cloning of human beings as ethically unacceptable include WHO and the World Medical Association. See Implementation of Resolutions and Decisions: Report of the Director-Generably, Prov. Agenda Item 20, at 2, U.N. Doc. A51/6 Add.l (1998); World Medical Association, World Medical Association Resolution on Cloning (visited Aug. 19, 1999) <http://www.wma.net/e/policy/20-2-97_e.html>. On the ethical and scientific implications of cloning, see WHO, supra at 2-3. Some scientific circles, however, question bans that could stifle research. See Meredith Wadman, Seed Sows Further Doubts on Human Cloning, 391 NATURE 218, 219 (1998).
148 See Xavier Bosch, Geneticists Discuss Ethics of Human Genome Project, 353 THE LANCET 1448, 1448 (1998). In December 1998, however, South Korean researchers claimed to have cloned a human embryo. See Rick Weiss, Cloned Human Embryo Created, South Korean Researchers Say, Wash. Post, Dec. 17, 1998, at A3. The announcement, however, has thus far not been accompanied by any scientific evidence. See id. Experts suggest that human cloning is unlikely in the near future. See Gina Kolata, Congress is Cautioned Against Ban on Human Cloning Work, N.Y. TIMES, Mar. 13, 1997, at Bll.
149 See discussion infra Part III.B.2 (describing international human rights law).
150 See Grad & Feitshans, supra note 42, at 275.
151 See id. at 280.
152 See id. at 275-83.
153 See id. For example, public health recommendations for human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS) at the national and regional levels espouse principles of confidentiality and informed consent. See, e.g., Sofia Grushkin et al., Human Rights and Responses to HIV/AIDS, in AIDS IN THE WORLD II 326, 330-31 (Jonathan Mann & Daniel Tarantola eds., 1996) (discussing intergovernmental efforts to prevent discrimination against people with AIDS).
154 See The Institutional Response, in AIDS IN THE World II, supra note 153, at 311, 311-12 (describing how respect for human rights in the form of education, prevention and care underlies public health approaches to HIV globally).
155 See Ronald Bayer & David Kirp, An Epidemic in Political and Policy Perspective, in AIDS in the Industrialized Democracies: Passions, Politics, and Knowledge 2, 4-5 (David L. Kirp & Ronald Bayer eds., 1992) (describing how two polar strategies, “cooperation-and-inclusion” and “contain-and-control,” are blended in public health practices to address more coherently both the public and private policy concerns emerging from the AIDS epidemic). As Frank Grad and Ilise Feitshans have noted,
The advent of AIDS at a time when there was greater consciousness of protection of civil liberties, protection against discrimination, and protection of privacy, began a process which drastically changed the balance of public protection vs. protection of individual privacy rights to come down more heavily on the side of protection of privacy concerns.
Grad & Feitshans, supra note 42, at 276.
156 See Grad & Feitshans, supra note 42, at 278. Advances in genetic science raise other public health issues beyond the scope of this Article.
157 See Grad & Feitshans, supra note 42, at 280.
158 Id.; see also WHO, Control of Hereditary Diseases, supra note 83, at 78 (noting that regulation of genetic screening should not extend beyond those areas informed by public consensus).
159 Grad & Feitshans, supra note 42, at 280. For instance, Grad and Feitshans point to cases such as newborn testing for phenylketonuria, a genetic disorder for which there is a successful therapy, where informed consent is “spurious or impossible to achieve.” Id.
160 One example of this involves the potential tension between individuals’ privacy and the governments’ maintenance of genetic databases. See supra note 126 and accompanying text (asserting that collection and storage of genetic data impinges on personal privacy, but is also critical for the potential development of treatments and cures for genetic diseases).
161 See Annas & Elias, supra note 97, at 10.
162 See Laurie, supra note 39, at 81-84.
163 See id. The argument for breaching patient confidentiality to inform family members involves careful consideration of highly complex scientific issues as well. The role that family history plays in increasing risk for some diseases, including cancer, is not scientifically well defined. See John L. Hopper, Some Public Health Issues in the Current State of Genetic Testing for Breast Cancer, 20 Australian & New Zealand J. Pub. Health 467, 469 (1996). Scientists have noted, for example, that family history does not necessarily imply a genetic cause, but can also be a consequence of environmental and other endogenous risk factors shared by families. See id.
164 See infra notes 211-216 and accompanying text (describing the strict limits imposed by international human rights on the restriction of individual rights for the protection of the general welfare).
165 The term eugenics was created by Francis Galton to designate “the study of the agencies under social control that may improve or impair the racial qualities of future generations, either physically or mentally.” Proctor, supra note 114, at 59, quoting F. Galton, Inquiries into the Human Faculty 44 (1883).
166 excess of 30 state eugenics programs allowed for forcible sterilization of individuals with a number of genetic defects, resulting in about 50,000 forcible sterilizations before World War II. American eugenicists also promoted the adoption of racial miscegenation laws and sought to bar immigration from “undesirable racial stocks.” Proctor, supra note 114, at 61. A majority of states also passed laws allowing forcible sterilization for low intelligence, certain forms of criminality and other characteristics. See Beckwith, supra note 33, at 328. At its height, the American eugenics movement was supported and confirmed by a 1927 U.S. Supreme Court decision upholding the forced sterilization of a woman diagnosed as “mentally feeble.” Writing for the majority, Justice Holmes stated:
We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the state for these lesser sacrifices, often not felt to be such by those concerned, in order to prevent our being swamped with incompetence. It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes. Three generations of imbeciles is enough.
Buck v. Bell, 274 U.S. 200, 207 (1927). The Supreme Court has never overturned the decision.
167 See Christian Pross, Nazi Doctors, German Medicine and the Historical Truth, in the Nazi Doctors and the Nuremberg Code: Human Rights in Human Experimentation 32 [hereinafter THE NAZI DOCTORS] (George J. Annas & Michael A. Grodin eds., 1992) (describing Nazi racial hygiene laws and polices involving the mass murder of Jews, the disabled, the mentally ill and the homeless). Nazi eugenics laws also resulted in forcible sterilization of some 350,000 people by the end of the Nazi period, and racial miscegenation laws barred marriage between Jews and non-Jews. See Proctor, supra note 114, at 61.
168 gee supra notes 114-23 and accompanying text (describing how genetic discoveries may lead to improper stigmatization of groups and individuals on the basis of race and ethnicity).
169 As Grad and Feitshans have argued, “[o]ur knowledge of past abuses, the fact that the groups concerned are politically aware, politically articulate, and not likely to tolerate such abuses provides some assurances that abuses of genetic information for eugenic or racial, religious or ethnic discriminatory purposes are not likely to recur in the future.” Grad & Feitshans, supra note 42, at 284.
170 See supra notes 122-27 and accompanying text (describing how genetics technology can be used as a tool to assist “ethnic cleansing” policies).
171 In 1989, China began a policy of forcibly sterilizing persons with mental disabilities. See Proctor, supra note 114, at 84; see also Martin Bobrow, Redrafted Chinese Law Remains Eugenic, 32 J. Med. Genetics 409,409 (1995).
172 See C.K. Chan, Eugenics on the Rise—Singapore, in Ethics, Reproduction and Genetic Control 164, 164 (Ruth Chadwick ed., 1987).
173 See id. at 165-66 (discussing measures taken by the government of Singapore to encourage marriage and childbirth between elite citizens); Proctor, supra note 114, at 84 (discussing the Chinese government’s sterilization of its mentally disabled citizens).
174 See Report by the Director-General on the Possibility of Drawing up an International Instrument on the Protection of the Human Genome, UNESCO, Item 65, at 11, U.N. Doc. 28 C/38 (1998) [hereinafter Possibility of Drawing Up the Human Genome]; WHO, Genetics Laws and Guidelines, supra note 112, at 10-51 (listing only Brazil, China and India as having adopted legislation related to human genetics).
175 See lies, supra note 86, at 39.
176 Such nations include Australia, Austria, Belgium, Denmark, France, Germany, Italy, Japan, the Netherlands, Norway, Poland, Spain, Switzerland, the United Kingdom and the U.S. See WHO, Genetics Laws and Guidelines, supra note 112, at 10-30. See Jean E. McEwen & Philip R. Reilly, State Legislative Efforts to Regulate Use and Potential Misuse of Genetic Information, 51 Am. J. Hum. GENETICS 637, 637 (1992) (analyzing state laws regulating genetic activity in the U.S.). Both the U.S. and the European Union have devoted substantial resources to examining the ethical, legal and social consequences of the HGP. See generally Organisation for Economic Co-operation and Development, supra note 13 (determining that part of the budget should be spent on examining these consequences); Juengst, supra note 126 (establishing the United States’ Ethical, Legal & Social Implications Program within the HGP).
177 See Christian Byrk, The Human Genome Project and the Social Contract: A Law Policy Approach, 17 J. Med. & Phil. 371, 373 (1993).
178 See id. at 374.
179 See id. at 375.
180 See id. see also infra notes 466-71 (describing how assisting nations in establishing and strengthening bioethics institutions can be an integral component of UNESCO technical cooperation programs pursuant to international instruments on the human genome).
181 See WHO, Genetics Laws and Guidelines, supra note 112, at 11, 17, 22, 24, 29-30.
182 See Possibility of Drawing Up the Human Genome, supra note 174, at 2; see also Bartha M. Knoppers & Ruth Chadwick, The Human Genome Principle Under an International Ethical Microscope, 265 Science 2035, 2035 (1994) (suggesting that areas of international consensus include autonomy, privacy, justice, equity and quality out of respect for human dignity).
183 See WHO, Genetics Laws and Guidelines, supra note 112, at 11, 29-30.
184 See id. at 22.
185 See id. at 17, 24. A 1993 amendment to the Polish Penal Code establishes criteria for “prenatal examinations that do not significantly increase the risk of abortion.” Id. at 24.
186 Regional institutions have made an important contribution in the elaboration of principles applicable to human rights in relation to technological developments. See Council of Europe, supra note 144; see also Resolution on Bioethics, Organisation of African Unity, Doc. AHG/RES.254 (XXXII) (July 1996). Discussion of the role of regional institutions, however, is beyond the scope of this Article. On the Convention on Human Rights and Biomedicine and proposed protocols thereto, see generally Allyn l. Taylor et al., International Health Instruments, Oxford Textbook of Public Health (4th ed., forthcoming 2000).
187 The International Bill of Human Rights, U.N. GAOR, 3d Sess., Supp. No. 1, at 71, U.N. Doc. A/565 (1948), includes: The Universal Declaration of Human Rights, U.N. GAOR, 3d Sess., 67th plen. mtg. at 1, U.N. Doc. A/811 (1948) [hereinafter Universal Declaration], The International Covenant on Economic, Social and Cultural Rights, G.A. Res. 2200, U.N. GAOR, 21st Sess., Supp. No. 16, at 49, U.N. Doc. A/6316 (1966) [hereinafter the ICESCR], The International Covenant on Civil and Political Rights, G.A. Res. 2200, U.N. GAOR, 21st Sess., Supp. No. 16, at 52, U.N. Doc. A/6316 (1966) [hereinafter the ICCPR] and The Optional Protocol to the International Covenant on Civil and Political Rights, G.A. Res. 2200, U.N. GAOR 21st Sess., Supp. No. 16, at 59, U.N. Doc. A/6316 (1966) [hereinafter the Optional Protocol], For analysis of provisions of the International Bill of Rights applicable to scientific and technological experiments, see UN, Human Rights and Scientific and Technological developments 77-83 (1982) [hereinafter Human Rights and Developments],
188 According to Henkin, “[w]ith time, the Universal Declaration has itself acquired significant legal status.” Henkin, supra note 98, at 19. The U.S. Supreme Court has recognized the Universal Declaration as a customary international law binding on all nations. See Filartiga v. Pena-Irala, 630 F.2d 876, 881-84 (2d Cir. 1980).
189 See ICCPR, supra note 187.
190 See ICESCR, supra note 187, at pmbl. (recognizing that enumerated rights “derive from the inherent dignity of the human person”); ICCPR, supra note 187, at pmbl. (stating that civil and political rights “derive from the inherent dignity of the human person.”); Universal Declaration, supra note 187, at art. 1 (proclaiming that all “human beings are bom free and equal in dignity and rights.”).
191 Sonia Le Bris et al., International Bioethics, Human Genetics and Normativity, 33 HOUS. L. Rev. 1363, 1375-76 (1997).
192 See ICCPR, supra note 187, at art. 26; ICESCR, supra note 187, at art. 2; Universal Declaration, supra note 187, at art. 2.
193 See Henkin, supra note 98, at 20.
194 See id.
195 See id. at 21 (stating that it is a recognized violation of international law for any nation to “practice or condone … [a] gross violation of internationally recognized rights.”).
196 See Henkin, supra note 98, at 20.
197 See id. at 21. Derogation from civil and political rights, however, is permitted only in an authentic national emergency. See ICCPR, supra note 187, at art. 4; Henkin, supra note 98, at 4. The derogation must not involve invidious inequalities and is not permitted from fundamental rights, including the right to life, the right to be free from torture or cruel, inhuman or degrading punishment, or a denial of rights as a person before the law, among others. See id.
198 See ICCPR, supra note 187, at art. 6.
199 See id. at art. 9.
200 See Le Bris et al., supra note 191, at 1376.
201 See ICCPR, supra note 187, at art. 7.
202 The Nuremberg Code and the Declaration of Helsinki are frequently cited as the core influences on the development of many international and national codes and governing research on human subjects. See Sharon Perley et al., The Nuremberg Code: An International Overview, in THE NAZI DOCTORS, supra note 167, at 149, 149; see also Robert F. Drinan, The Nuremberg Principles in International Law, in THE NAZI DOCTORS, supra note 167, at 174, 182. One example of these subsequent instruments is the International Guidelines for Ethical Review of Epidemiological Studies. See Council for International Organizations of Medical Sciences Issues International Guidelines for Ethical Review of Epidemiological Studies, 43 INT’L DIG. HEALTH LEGIS. 180, 183 (1992). Additional international and regional texts define the parameters of ethical medical research on human subjects. See Le Bris et al., supra note 191, at 1380-82; Greely, supra note 117, at 1399-400 (noting the effect international declarations have had on U.S. biomedical research laws). The principle of informed consent of human research subjects has been adopted widely. Participants must be fully informed of the nature, scope and risks of research. See Greely, supra note 117, at 1406-08.
203 See ICESCR, supra note 187, at art. 2 (noting that the nations in the Covenant recognize the “inherent dignity … of all members of the human family,” whereby everyone is allowed to “enjoy his economic, social and cultural rights, as well as his civil and political rights.”).
204 ICESCR, supra note 187, at art. 15. Other instruments, including the Vienna Declaration, emphasize the duty to share the benefits of scientific progress. See supra note 135 and accompanying text.
205 See generally Hague Academy of International Law, the Right to Health as a Human Right (Rene-Jean Dupuy ed., 1979) (analyzing the right to health in international law); see also Taylor, supra note 88, at 309-11.
206 ICESCR, supra note 187, at art. 12(1). Article 12(2) of the Covenant identifies measures to be undertaken by member states to achieve full realization of the right to health. See id. at art. 12(2).
207 See Henkin, supra note 98, at 20 (noting that although the undertaking of the Covenant is to achieve the designated rights progressively and in light of the nation’s available resources, the undertaking is a “legal obligation subject to international interpretation and scrutiny.”).
208 See id. at 20 n.*.
209 id The scope of the obligation to implement the right to health through international assistance may, however, be expanding. Emerging international health challenges, including the tobacco pandemic, demonstrate that the world community cannot isolate the health concerns of one nation from those of other countries, conceptually or practically. A nation’s obligation to provide the conditions of health to its domestic population may entail some expanding duty of international assistance to the health sectors of poorer nations, including, perhaps, support for the development of community genetic services.
210 See id. at 4.
211 Id.
212 Declaration, supra note 3, at art. 29(2). Similarly, Article 4 of the ICESCR may limit rights in the Covenant “for the purpose of promoting the general welfare.” ICESCR, supra note 187, at art. 4. States’ authority to implement measures restricting rights is highly restricted under the ICCPR. Article 4 of the ICCPR declares that states may deviate from the Covenant: (1) during an officially proclaimed public emergency that threatens the life of the nation, (2) to the “extent strictly required by the exigencies of the situation,” and (3) insofar as such measures are not applied in a discriminatory manner. ICCPR, supra note 187, at art. 4. Hence, the ICCPR allows limitations on a narrow class of protected rights if needed to promote the public order and public safety. See id. International human rights law thus reflects “implicit political-moral principles” of democratic societies that accepts some highly restricted limitations on individual rights for the common good. See Henkin, supra note 98, at 9.
213 For example, the ICCPR specifies that the provisions should not be interpreted to limit the rights recognized to a greater extent than provided for in the instrument itself and may not be interpreted to restrict a country’s other fundamental human rights granted by law or custom. See ICCPR, supra note 187, at 50.
214 In a document prepared for the Economic and Social Council, international law experts analyzing the ICCPR concluded that “[p]ublic health may be involved as a ground for limiting certain rights in order to allow the state to take measures dealing with a serious threat to the health of the population … .” Siracusa Principles, U.N. ECOR Commission on Human Rights, 41st Sess., Annex, Agenda Item 18, at 4, U.N. Doc. E/CN.4/1985/4 (1984). Restricting human rights for societal welfare, however, demands an acute sensitivity to the nature of the burden imposed on the individual and the strict limits permitted by human rights law. Moreover, “considerations of… public order permitting limitations on certain rights, refer to a universal standard, monitored by external scrutiny and judgment.” Henkin, supra note 98, at 4.
215 See Human Rights and Developments, supra note 187, at 93 (discussing the need to draft an international declaration concerning human rights and scientific developments).
216 The interest of the United Nations (UN) in this area can be traced from the International Conference on Human Rights in Tehran in 1968. See Sadako Ogata, Introduction: UN Approaches to Human Rights and Scientific and Technological Developments, in Human Rights and Developments, supra note 187, 1, at 3-6 (describing UN activity in relation to bioethics and developments in genetic science). In 1995 the Commission for Human Rights recognized that expanded international cooperation was necessary to ensure that the world community benefits from advances in genetic sciences and to avoid the potentially adverse consequences of scientific developments. view with Mr. Ibrahima Fall, Assistant-Secretary-General for Human Rights of UN, 3 Spotlight on Ethics (June 1996), available online at <http://www.credm.com/~unserv/cib/uk/parole/num3/interv.html>. On the role of the UN in bioethics, see generally Taylor Et al., supra note 186.
217 The trend in international standard setting for addressing human rights of vulnerable populations reflects the growing trend of paying attention to the rights of “groups” within society. See Hannum, supra note 121, at 2-3.
218 See UN General Assembly Adopts ‘UN Principles for Older Persons ’, 44 Int’l Dig. Health Legis. 360, 360-62 (1993) (describing a resolution of the General Assembly acknowledging the “contribution that older persons make to their societies,” and government’s duties to provide for the independence, care, participation in society, self-fulfillment and dignity of the elderly).
219 See The Convention on the Elimination of All Forms of Discrimination Against Women, G.A. Res. 180, U.N. GAOR, 34th Sess., Supp. No. 46, at 196, U.N. Doc. A/34/46 (1980) [hereinafter CEDAW].
220 See Arlene Bowers A;ndrews & Natalie Hsevener Kaufman, Implementing the UN Convention on the Rights of the Child: a Standard of Living Adequate for Development 219-35 (1999) [hereinafter CRC].
221 See supra notes 114-26 and accompanying text (describing how HGP technology may exacerbate discrimination or stigmatization of groups).
222 See Prevention of Disability and Rehabilitation of Disabled Persons, E.S.C. Res. 1921, U.N. ESCOR, 58th Sess., Supp. No. 1, at 29-30, U.N. Doc. A/58/1 (1975).
223 See The Declaration on the Rights of Disabled Persons, G.A. Res. 3447, U.N. GAOR, 30th Sess., Supp. No. 34, at 92, U.N. Doc. A/10034 (1975); Prevention of Disability and Rehabilitation of Disabled Persons, supra note 222, at 29.
224 See Prevention and Control of Acquired Immunodeficiency Syndrome (AIDS), G.A. Res. 187, U.N. GAOR, 45th Sess., Supp. No. 49A, at 114-15, U.N. Doc. A/45/49 (1990). Discrimination against persons with AIDS has been a prominent issue in the UN and its organs during this decade. See, e.g., Discrimination Against HIV-Infected People or People with AIDS: Final Report submitted by Mr. Varela Quiros, Special Rapporteur, U.N. ESCOR Hum. Rts. Comm’n, Sub-Comm’n on Prevention of Discrimination and Protection of Minorities, 44th Sess., Prov. Agenda Item 4, at 10, U.N. Doc. E/CD.4/Sub.2/1992/10 (1992).
225 See The Protection of Persons with Mental Illness and the Improvement of Mental Health Care, G.A. Res. 119, U.N. GAOR, 46th Sess., Supp. No. 49, Annex, at 188-92, U.N. Doc. A/46/49 (1991); see also Eric Rosenthal & Leonard Rubenstein, International Human Rights Advocacy Under the ‘Principles for the Protection of Persons with Mental Illness’, 16 Int’l J.L. & Psychiatry 257. 259 (1993).
226 See Declaration on the Rights of Mentally Retarded Persons, G.A. Res. 2856, U.N. GAOR, 26th Sess., Supp. No. 29, at 93, U.N. Doc. A/8429 (1971).
227 See The Protection of Persons with Mental Illness and the Improvement of Mental Health Care, supra note 225, at 188-92; Prevention and Control of Acquired Immunodeficiency Syndrome (AIDS), supra note 224, at 114-15; Prevention of Disability and Rehabilitation of Disabled Persons, supra note 222, at 29-30 (including no discussion of state obligations or individual entitlements with respect to genetic science); Declaration on the Rights of Mentally Retarded Persons, supra note 226, at 93-94.
228 UNESCO has a complicated decentralized structure, with central headquarters in Paris, six regional offices and numerous country and field offices. See About UNESCO (visited Oct. 31, 1999) <http://www.unesco.org/general/eng/about/index.html> (giving an overview of the structure of UNESCO). The General Conference determines overall policy and the “main lines of work of the Organization.” Constitution of the UN Educational, Scientific and Cultural Organization, in UNESCO, Basic Texts: Manual OF the General Conference and the Executive Board 7, 10 (1994) [hereinafter UNESCO, Basic Texts], The Executive Board, elected by the General Conference, is responsible for giving effect to the policies of the General Conference. See id. at 13-14. The Secretariat consists of the Director-General and administrative and technical staff. See id. at 15. The Director-General, nominated by the Executive Board, is the Organization’s chief administrative officer. See id. at 15.
229 The UNESCO Constitution was adopted in London on November 16, 1945. See UNESCO, Basic Texts, supra note 228, at 7.
230 See id. at 8.
231 See id. at 162.
232 See UNESCO, Approved Programme and Budget 1996-1997, at xii, U.N. Doc. 28 C/5 (1996) (noting that the regular budget is expected to be complemented by extra-budgetary resources estimated in excess of $307 million, making a combined total in excess of $826 million for the biennium).
233 See C. Anthony Giffard, UNESCO and the Media 2 (1989). Like other specialized agencies, UNESCO has only a treaty relationship with the UN. See UNESCO, Basic Texts, supra note 228, at 163 (specifying that UNESCO will advise the UN on educational, scientific and cultural matters).
234 A number of other intergovernmental organizations have played a role in addressing global HGP issues and have either a general or specific constitutional mandate to do so, including WHO and the UN. See Le Bris et al., supra note 191, at 1365-66.
235 UNESCO, Basic Texts, supra note 228, at 8.
236 Promotion of human rights has continued to occupy a central concern of the Organization’s overall program, as is evidenced by the number of areas of human rights activities enumerated in its Medium Term Plan for 1996-2001. See UNESCO, Medium-Term Strategy 1996-2001, at 41, U.N. Doc. 28 C/4 (1996) (noting that UNESCO’s aims for 1996-2000 include advancing human rights through increased action in its fields of competence). But see David Weisbrodt & Rose Farley, The UNESCO Human Rights Procedure: An Evaluation, 16 Hum. RTS. Q. 391, 410-11 (1994) (suggesting that UNESCO has neglected human rights activities during the last couple of decades).
237 UNESCO has “somewhat amorphous and extremely wide responsibilities including science, culture, and social sciences as well as education.” Evan Luard, International Agencies: The Emerging Framework of Interdependence 186 (1977); see also Philip Alston, UNESCO’s Procedure for Dealing with Human Rights Violations, 20 SANTA CLARA L. REV. 665, 666-69 (1980) (describing the broad role of UNESCO in the promotion and protection of human rights and the Organization’s broad purpose which is to contribute to peace and security through education, science and culture); Stephen Marks, UNESCO and Human Rights: The Implementation of Rights Relating to Education, Science, Culture, and Communication, 13 Tex. Int’l L.J. 35, 38—42 (1977) (noting that UNESCO’s human rights mandate is very general); Stephen Marks, The Complaints Procedures of the UN Educational, Scientific and Cultural Organization, in Guide to International Human Rights Practice, at 94, 96-97 (Hurst Hannum ed., 1984).
238 See Finnemore, Martha, International Organizations as Teachers of Norms: The UN Educational, Scientific and Cultural Organization and Science Policy, 47 Int’l Org. 565, 576-87 (1993)Google Scholar; see also infra notes 466-68 and accompanying text (describing UNESCO’s important contribution of helping establish national science policy organizations and international scientific institutions).
239 See Brody, supra note 46, at vii.
240 See infra notes 241-55 (describing the IBC’s role in drafting the Declaration); see also infra notes 282-285 (describing the Director-General’s role in selecting the members of the IBC); infra notes 434-448 (describing the IBC's role in monitoring compliance with UNESCO).
241 See International Bioethics Committee to Discuss Moral Issues of Genetic Research (visited Oct. 31, 1999) <http://www.unesco.org/opi/eng/unescopress/96-165e.htm>.
242 See Report by the Director-General on the Possibility of Drawing Up an International Instrument on the Protection of the Human Genome, UNESCO, Prov. Agenda Item 7.5, at 5-6, U.N. Doc. 28 C/38 (1995).
243 See Kutukdjian, supra note 5, at 3.
244 gee Preparation of an International Instrument for the Protection of the Human Genome, UNESCO, 27 C/Res. 5.15 (1993), reprinted in Records of the General Conference, UNESCO, 27th Sess., Item 5.15, at 69-70 (1993).
245 See UNESCO, UNESCO’s International Standard-Setting Instruments: Incorporating Supplement 2, at XII (1986) [hereinafter UNESCO, Standard-Setting Instruments] (discussing UNESCO’s international lawmaking process).
246 for an analysis of UNESCO’s lawmaking authority, see Id. at XI-XV; D.W. Bowett, the Law of International Institutions 144 (4th ed., 1982).
247 See UNESCO, Basic Texts, supra note 228, at 10-12. It is notable that UNESCO’s Constitution does not mention the adoption of declarations. See id. In general, recommendations and declarations are nonbinding instruments that are frequently indistinguishable from each other. See Henry G. Schermers & Niels M. Blokker, International Institutional Law: Unity Within Diversity 754 (3d ed., 1995) (noting that, substantively, recommendations and declarations are similar: “recommendations propose changes to the rule of law, whereas declarations are statements that particular legal rules exist.”). However, as a procedural matter, there are important differences between UNESCO declarations and recommendations. See UNESCO, Standard-Setting Instruments, supra note 245, at XIV (noting that “[i]n the drafting, adoption and implementation of UNESCO declarations, no rule of procedure similar to the [UNESCO] Rules of Procedure concerning Recommendations to Member States and International Conventions is followed: unlike the latter, declarations are adopted by an ordinary resolution of the General Conference.”).
248 See Presentation of the Preliminary Draft of a Universal Declaration on the Human Genome and Human Rights: Report by Mrs. Nolle Lenior, UNESCO, at 17, U.N. Doc. CIP/BIO/96/COMJUR.6/5 (Rev.) (1996) [hereinafter UNESCO, Presentation of the Declaration on the Human Genome].
249 See Revised Outline of a Declaration on the Protection of the Human Genome, UNESCO, at 12, U.N. Doc. BIO/C1B-COMJUR/95 (1995) [hereinafterUNESCO, Revised Outline].
250 See Butler, supra note 4, at 222.
251 See Drawing Up of an International Declaration on the Human Genome and the Protection of Human Rights, reprinted in Records of the General Conference, UNESCO, 28th Sess., Item 2.2, at 31 (1995).
252 See Declaration on Human Genome Approved, 4 UNESCO News, Feb. 20, 1997, at 4, 5.
253 See Summary of the Debate on Bioethics, UNESCO, 28th Sess., at 4, U.N. Doc. CIP/BIO/96/COMJUR.6/3 (1996).
254 See UNESCO, Revised Outline, supra note 249, at 10.
255 See Final Report: Committee of Governmental Experts for the Finalization of a Declaration on the Human Genome, UNESCO, at 1, U.N. Doc. BIO-97/CONF.2CI1/19 (1997).
256 See The Human Genome and Human Rights, U.N. Res. 53/152, 53d Sess., Agenda Item 110(b), U.N. Doc. A/RES/53/152 (1999); see also Human Rights and Bioethics, Comm’n H.R., 58th Meeting, U.N. Doc. E/CN.4/RES/1999/63 (1999); Human Rights and Bioethics, Comm’n H.R., 67th Meeting, U.N. Doc. E/CN.4/RES/1997/71 (1997).
257 UNESCO, Presentation of the Declaration on the Human Genome, supra note 248, at 1-2. According to the IBC, “[i]n this respect the declaration recalls three essential principles which are the foundation-stone of the protection of humanity with regard to implications of biology and genetics: the dignity of the individual, freedom of research, and human solidarity.” Id.
258 See generally Preliminary Draft of a Universal Declaration on the Human Genome and Human Rights, UNESCO, U.N. Doc. CIP/BIO/96/COMJUR.6/2 (Prov. 5) (1996) (discussing the topics included within the seven chapters of the Declaration).
259 See Declaration, supra note 3, at art. 5(b); see also supra note 201 and accompanying text (describing Article 7 of ICCPR, which prohibits human experimentation without informed consent); supra note 202 and accompanying text (describing how the Nuremberg Code emphasizes the principle of free and informed consent). The Declaration does provide, however, for detailed exceptions to the requirement of informed consent for persons without the capacity to consent. See Declaration, supra note 3, at art. 5(e).
260 See Declaration, supra note 3, at art. 7.
262 See lies, supra note 86, at 37.
263 See Inclusion International, Protecting Human Dignity and Human Rights: Response to the IBC Draft of September 1995 on the Human Genome and Modifications (Int’l League of Societies for Persons with a Mental Handicap, Brussels, Belgium), Jan. 1996, at 11 [hereinafter Inclusion International Response]’, Alex Mauron, HGP: The Holy Genome Project, 5 Eubios J. Asian & Int’l Bioethics 117, 118-19 (1995).
264 See Inclusion International Response, supra note 263, at 11; Mauron, supra note 263, at 119; lies, supra note 86, at 43.
265 See Memorandum from Dr. Victor Boulyjenkov to Dr. G. Benagiano, Ms. M.H. Leclerq, Ms.G. Pinet (Aug. 28, 1995) (memorandum on file with author) (commenting on the UNESCO Declaration on the Protection of the Human Genome); see also lies, supra note 86, at 42.
266 See lies, supra note 86, at 32.
267 Declaration, supra note 3, at art. 17.
268 Id. at 4; see supra notes 187-95 and accompanying text (describing how the principle of nondiscrimination is one of the most declared principles of international law applicable to all human rights).
269 See Declaration, supra note 3.
270 See id.
271 Id. at art. 5(d).
272 Id. atari. 19(a)(iv).
273 See lies, supra note 86, at 43. Indeed the president of the IBC has acknowledged that the committee would be able to reach consensus on the Declaration precisely because it avoided addressing controversial issues in genetics, including therapeutic abortion. See Butler, supra note 4, at 369. Initially, the IBC planned to address a wider range of issues, including commercial protection of genetic data. See Kutukdjian, supra note 5, at 4.
274 See lies, supra note 86, at 43.
275 See id. at 48.
276 See discussion supra Part III.A.2.C.
277 See supra notes 211-16 and accompanying text.
278 Notably, Article 9 of the Declaration provides that “limitations to the principles of consent and confidentiality may only be prescribed by law, for compelling reasons within the bounds of public international law and the international law of human rights.” Drawing Up of a Declaration on the Human Genome: A Report by the Director-General, supra note 6, at 14. Although Article 9 can be read as consistent with a public health exception to confidentiality and consent in limited circumstances, the “explanatory note” to the Declaration suggests that the drafters intended no such broad exception. See id. at 7-8. In examining how Article 9 “severely restricts the possibility of limitations,” the drafters cite two possible narrow examples in judicial contexts: genetic tests to determine paternity and genetic fingerprinting to be taken for identification purposes in cases of murder or rape. See id. at 14.
279 See lies, supra note 86, at 60.
280 See id. at 59-60.
281 As Henkin has observed, “nations will comply with international law only if it is in their best interest to do so; they will disregard law or obligation if the advantages of violations outweigh the advantages of observance.” Louis Henkin, How Nations Behave: Law and Foreign Policy 46 (1968) [hereinafter How Nations Behave].
282 Implementation of the Universal Declaration on the Human Genome and Human Rights, reprinted in Records of the General Conference, UNESCO, 29th Sess., 29 C/Res. 17, at 46 (1997). On progress achieved in implementing the Declaration, see generally Hector Gros Espiell, Follow-up of the Implementation of the Universal Declaration on the Human Genome and Human Rights, in UNESCO, International Bioethics Committee, l Proceedings of the Fifth Session, at 45 (1998).
283 Implementation of the Universal Declaration on the Human Genome and Human Rights, supra note 282, at art. 2(a).
284 See Report by the Director-General on the Implementation of the Universal Declaration on the Human Genome and Human Rights, UNESCO, 154th Sess., Prov. Agenda Item 8.4, U.N. Doc. 154 EX/41 (1998).
285 See id. see also Statutes of the International Bioethics Committee (IBC), UNESCO, 154th Sess., Annex, Item 8.4, U.N. Doc. 154 EX/41, reprinted in Decisions Adopted by the Executive Board at its 154th Session, UNESCO, 154th Sess., art. 1, at 38, U.N. Doc. 154/EX/Decisions (1998).
286 See Statutes of the International Bioethics Committee, supra note 285, at 39.
287 Id. for a full listing of functions of the IBC, see Id. According to the Director-General’s report on the ad hoc working group convened in March 1998 to consider the functions of the IBC, the suggested tasks for it were described as follows:
It was recommended that the IBC should step up its action in relation to bioethics education, and that it should act as a clearing-house for scientists, national ethics committees, decision-makers and the representatives of vulnerable groups: It should promote the broadest possible dissemination of information about any measures taken by states in the fields covered by the Universal Declaration. IBC should also give advice in order to encourage the harmonization of existing systems to protect human rights and freedoms in light of advances in the life sciences.
Report by the Director-General on the Implementation of the Universal Declaration on the Human Genome and Human Rights, supra note 284, at 2. In addition to establishing the IBC, the Statutes of the IBC set up an Intergovernmental Committee, consisting of 36 representatives of Member States, to advise the IBC and to follow-up on the recommendations of the IBC by submitting its opinions to the Director-General, together with the advice and recommendations of the IBC, for submission to Member States, the Executive Board and the General Conference. See Statutes of the International Bioethics Committee, supra note 285, at 41.
288 Statutes of the International Bioethics Committee, supra note 285, at 39.
289 See id.
290 See id. at 39. The Statutes of the IBC further provide that the Director-General shall take into account nominations of “eminent persons” from Member States when appointing members of the IBC and that he shall not appoint simultaneously more than one national of the same state. See id. at 39-40.
291 See Luard, supra note 237, at 288-306.
292 Notably, previous versions of the Declaration authorized the IBC to monitor national implementation of the instrument. See UNESCO, Revised Outline, supra note 249, at 16; Preliminary Draft of a Universal Declaration on the Human Genome and Human Rights, supra note 258 (setting forth in Article 22 that “[t]he International Bioethics Committee of UNESCO shall monitor the observance of the principles set out in this Declaration.”). The role that international monitoring could play in encouraging nations to implement the terms of the Declaration was considered to some degree by the IBC. See The Possibility of Drawing Up an International Instrument on the Protection of the Human Genome and Human Rights, Report by the Director-General, supra note 242, at 16-17; UNESCO, Seventh Meeting of the Legal Commission of the IBC, Mechanism for monitoring the Future Universal declaration on the Human Genome and Human Rights, Paper Presented by Mr. Hector Gros Espiell, Chairperson of the Legal Commission of the IBC, U.N. Doc. CIP/BIO/96/COMJUR.7/3 (1996).
293 See Louis Henkin, the International Bill of Rights ch. 14 (1981). For a discussion of the evolution of procedures to monitor the implementation of human rights treaties, see Antonio Trindade, The Current State of the International Implementation of Human Rights, 3 HAGUE Y.B. INT’L L. 3, 3-11 (1990); Louis B. Sohn, Human Rights: Their Implementation and Supervision by the UN, in 2 Human Rights in International Law: Legal and Policy Issues 369, 369 (Theodor Meron ed., 1984).
294 The International Labour Organization (ILO) is a specialized agency of the UN, but it predates the UN by 26 years. Since its inception, the ILO has given cardinal importance to the adoption of international labor conventions and recommendations and the supervision of government compliance with such standards in order to carry out its mandate in labor and social policy. As of 1996, 176 conventions and 183 recommendations on labor matters have been adopted by the annual International Labour Conferences. See Virginia A. Leary, Lessons From the Experience of the International Labour Organisation, in The UN and Human Rights: a Critical Appraisal 580, 582-83 (Philip Alston ed., 1992) [hereinafter THE UN and Human Rights]. For a discussion of the ILO’s background, see generally Steve Chamovitz, Promoting Higher Labor Standards, WASH. Q., Summer 1995, at 167.
295 See Leary, supra note 294, at 595.
296 For analysis of the evolution of the treaty bodies, see Philip Alston, Appraising the UN Human Rights Regime, in The UN and Human Rights, supra note 294, at 1, 10-12. For an overview of the UN organs that are engaged in the promotion of human rights, see id. at 1-20. A distinction must be drawn between the activities of charter-based organs and the treaty bodies of the UN involved in human rights protection. See id. at 4. This Article will only address the activities of the treaty bodies that derive their legitimacy and authority from UN human rights treaties.
297 gee Torkel Opshal, The Human Rights Committee, in The UN and Human Rights, supra note 294, at 369, 378-84.
298 See Karl Josef Partsch, The Committee on the Elimination of Racial Discrimination, in The UN and Human Rights, supra note 294, at 339, 339.
299 See Roberta Jacobson, The Committee on the Elimination of Discrimination Against Women, in The UN and Human Rights, supra note 294, at 444,444.
300 See Andrew Byrnes, The Committee Against Torture, in The UN and Human Rights, supra note 294, at 509, 509.
301 See generally CRC, supra note 220 (providing a comprehensive view of the near universal concerns raised and efforts undertaken by the UN to address the needs of children worldwide).
302 see generally Matthew C.R. Craven, The International Covenant on Economic, Social, and Cultural Rights: a Perspective on its Development (Ian Brownlie ed., 1995) (providing an in-depth analysis and critique of the Committee on Economic, Social and Cultural Rights (CESCR)). The human rights treaties themselves provide for the establishment of the above-mentioned supervisory bodies and regulate their functions and powers. CESCR, however, is unique in that it is a hybrid established by the Economic and Social Council of the UN (ESOSOC) which derives its capacity to take action from resolutions of international organizations, rather than treaties. See Alston, supra note 296, at 11.
303 See Elisabeth Komblum, A Comparison of Self-Evaluating State Reporting Systems, 35 Int’l Rev. Red Cross 39 (1995). For discussion of the reporting mechanisms used by international environmental organizations, see Francesco Francioni, International Co-operation for the Protection of the Environment: The Procedural Dimension, in Environmental Protection and International Law 203, 203-25 (W. Lang et al. eds., 1991); Alexandre Kiss, The Implications of Global Change for the International Legal System, in Environmental Change and International Law: New Challenges and Dimensions 315, 326-29 (Edith Brown Weiss ed., 1992); Patrick Sz6U, The Development of Multilateral Mechanisms for Monitoring Compliance, in Sustainable Development and International Law 97, 97-113 (Winfried Lang ed., 1995); see also Allyn L. Taylor & Ruth Roemer, WHO, Programme on Substance Abuse, International Strategy for Tobacco Control, 18-20 WHO Doc. PSA/96.6 (1996) (feasibility study proposing the development of monitoring institutions to promote implementation of a tobacco control convention).
304 See Theodore Meron, Human Rights Law-Making in the UN: A Critique of Instruments and Process 214-43 (1986) (discussing jurisdictional relations between human rights instruments and organs); Klaus T. Samson, Human Rights Co-ordination within the UN System, in THE UN And Human Rights, supra note 294, at 620, 620-75; Theo van Boven, ‘Political’ and ‘Legal’ Control Mechanisms: Their Competition and Coexistence, in Human Rights in Perspective: A Global Assessment 36, 36-58 (Asbjfim Eide & Bemt Hagtvet eds., 1992) [hereinafter Human Rights in Perspective].
305 See Samson, supra note 304, at 659-62.
306 See id. at 621-23; see also infra notes 400-02, 405-13 and accompanying text (describing UNESCO’s current supervisory procedures).
307 See Samson, supra note 304, at 620, 621-23.
308 In the field of human rights, the focus of the international community has shifted from standard setting to ensuring respect for established human rights. The emphasis on implementation of human rights is reflected in the Vienna Declaration and Programme of Action produced at the 1993 World Conference for Human Rights. See Vienna Declaration, supra note 135; see also Zdzislaw Kedzia, The Vienna World Conference on Human Rights: Failure or Milestone in Human Rights History, VIII Int’l Geneva Yearbook 51, 58-59 (1994). In the field of environmental law, mechanisms to promote implementation are extensively examined in Engaging Countries: Strengthening Compliance with International Environmental accords (Edith Brown Weiss & Harold K. Jacobson eds., 1999).
309 The temporal dimension of international law implementation further complicates the assessment of monitoring procedures. See Abraham Chayes & Antonia Handler Chayes, On Compliance, 47 INT’L ORG. 175, 184 (1993). Regulatory regimes characteristically seek to manage major international problems, and the significant changes in economic or social systems required by these instruments take time to accomplish. See id. at 195. In other words, because state behavior may be deeply embedded in social and political practices, efforts to change national behavior must operate over a period of time. Consequently, there may be a significant time lag between international regulation and national compliance. Further, many regimes contain long-term regulatory strategies that are designed to initiate a process that leads to changes in state behavior and the behavior of nonstate actors over time. Examples of such strategies include the convention-protocol strategy adopted in a number of environmental and other treaties, and the dynamic legislative strategy embraced by many international organizations of moving from nonbinding to binding instruments. See id. at 196; Taylor, An International Regulatory Strategy, supra note 94, at 283-98.
310 See Oscar Schachter, The UN Legal Order: An Overview, in The UN and International Law 1, 13 (Christopher Joyner ed., 1997). With respect to the UN human rights conventions one authority has noted that the “respective ‘treaty bodies’ have in recent years engaged in a veritable competition among each other to turn their supervisory function from a useless ritual into a meaningful exercise, above all by enabling more effective participation by non-governmental organizations as well as devising persistent follow-up procedures.” Brunno Simma, Human Rights, in The UN at Age Fifty: A Legal Perspective 261,273 (Christian Tomuschat ed, 1995).
311 See Ineke Boerefijn, Towards a Strong System of Supervision: The Human Rights Committee's Role in Reforming the Reporting Procedure Under Article 40 of the Covenant on Civil and Political Rights, 17 Hum. Rts. Q. 766, 767 (1995) (noting that a system of supervision “has its built in limitations: … states … must first ratify or accede to a legally binding instrument; the system continually requires at least some level of cooperation by states; and there are no effective sanctions for noncompliance with the objections states parties have accepted.”).
312 See Theo van Boven, The International System of Human Rights: An Overview, in Manual on Human Rights Reporting, supra note 317, at 3, 4 (examining the concept of state sovereignty within the sphere of international law).
313 See Boerefijn, supra note 311, at 767.
314 See van Boven, supra note 304, at 37.
315 See id. at 47-49; see also supra note 309 and accompanying text.
316 See van Boven, supra note 304, at 36-37 (“[I]t should be understood that all these international control mechanisms and international supervisory techniques can never be considered as substitutes for national mechanisms and national measures to give effect to human rights standards.”).
317 See Philip Alston, The International Covenant on Economic, Social and Cultural Rights 1, 13, in UN, Institute for Training and Research, Manual on Human Rights Reporting, U.N. Doc. HR/PUB/91/1 (1991) [hereinafter MANUAL ON HUMAN RIGHTS REPORTING].
318 See Chayes & Chayes, supra note 309, at 184. See generally Abraham Chayes & Antonia Handler Chayes, The New Sovereignty (1995) (proposing a managerial model that relies on cooperative problem solving to substitute the traditional enforcement model of compliance through sanctions).
319 In recent years, the ILO standard setting practices have come under considerable criticism from both within and outside the organization. In particular, there is increasing criticism that, with over 180 conventions and an equivalent number of recommendations, some of which are obsolete, the supervisory mechanisms and states have been overburdened. Observers have also criticized the ILO’s substantive approach to labor standard setting. See Chamovitz, supra note 294, at 17-75.
320 See Theodor Meron, Reform of Law-Making the UN: The Human Rights Instance, 79 Am. J. INT’LL. 664, 674-75, 677-79 (1985).
321 Despite the limitations of supervisory systems for human rights, “[o]ne has [to] permanently … keep in mind how revolutionary such … [supervisory systems] must appear contrasted with the pre- 1945 structures and processes of international law.” Simma, supra note 310, at 266; see also Henkin, supra note 281, at 228-39 (analyzing development of human rights law); Henkin, supra note 98, at 119; van Boven, supra note 312, at 3. In the realm of human rights, the development of supervisory procedures and other international measures “exposes to foreign scrutiny, criticisms and even more tangible reactions a realm which was traditionally shielded against such influences like no other aspect of sovereignty.” Simma, supra note 310, at 267.
322 See Patricia W. Birnie & Alan E. Boyle, International Law and the Environment 162(1992).
323 Id.
324 See van Boven, supra note 304, at 37.
325 See Rachel Brett, The Contributions of NGOs to the Monitoring and Protection of Human Rights in Europe: An Analysis of the Role and Access of NGOs to the Inter-Governmental Organisations, in Monitoring Human Rights in Europe: Comparing International Procedures and Mechanisms, at 121, 121-22 (Arie Bloed et al. eds., 1993) [hereinafter Monitoring Human Rights in Europe].
326 See generally Sohn, supra note 293 (listing the implementation procedures used by member states of the UN and its agencies).
327 See Vojin Dimitrijevic, The Monitoring of Human Rights and the Prevention of Human Rights Violations Through Reporting Procedures, in Monitoring Human Rights IN Europe, supra note 325, at 1, 6-7.
328 See van Boven, supra note 312, at 8.
329 See id. at 41.
330 Generally, these reports consist of an initial report followed by periodic reports at four or five year intervals. See Alston, supra note 317, at 13, 14-15. For a thorough analysis of the reporting process, see generally Fausto Pocar & Cecil Bernard, National Reports: Their Submission to Expert Bodies and Follow-up, in Manual on Human Rights Reporting, supra note 317, at 25; see also Alston, supra note 296, at 11; Economic, Social and Cultural Rights: a Textbook 356-63 (Asbjom Eide et al. eds., 1995). For a detailed analysis of the reporting process under various human rights committees, see generally Alston, supra note 317, at 39; Fausto Pocar, The International Covenant on Civil and Political Rights, in Manual on Human Rights Reporting, supra note 317, at 79; Luis Valencia Rodriguez, The International Convention on the Elimination of All Forms of Racial Discrimination, in Manual on Human Rights Reporting, supra note 317, at 127.
331 See Birnie & Boyle, supra note 322, at 33-35 (describing the impact of the UN implementation procedures on international environmental law).
332 see Adronico O. Adede, International Environmental Law Digest: Instruments for International Response to Problems of Environment and Development 1972-1992 100-01 (1993) (providing a checklist of the varying provisions found in environmental treaties).
333 See Birnie & Boyle, supra note 322, at 166 (including the 1974 Paris Convention for the Prevention of Marine Pollution from Land-Based Sources, the Basel Convention on the Control of Transboundary Movements of Hazardous Wastes and the Convention on International Trade in Endangered Species of Wild Fauna and Flora (CITES Convention)); see also Kamen Sachariew, Promoting Compliance with International Environmental Legal Standards: Reflection on Monitoring and Reporting Mechanisms, Y.B. INT’L ENVT’L L. 1,31 (1991).
334 See Sachariew, supra note 333, at 41.
335 See id. at 41—42.
336 See id.
337 See Niels Blokker & Sam Muller, Towards More Effective Supervision by International Organizations: Some Concluding Observations, in 1 Towards More Effective Supervision by International Organizations 274, 281 (Niels Blokker & Sam Muller eds., 1994).
338 See id. The authors suggest “[o]ften it seems that, while self-criticism is considered sane for human beings, things are different for states. The slightest amount of self-criticism is regarded as utter masochism, a trait which has never been associated with sovereignty.” Id. at 281-82; see also Harris O. Schoenberg, The Implementation of Human Rights by the UN, 7 ISR. Y.B. Hum. RTS. 22, 37 (1977).
339 See Chayes & Chayes, supra note 309, at 165 (noting some of the drawbacks inherent in selfreporting mechanisms and showing that information obtained independent of governments may not be subject to these flaws).
340 Numerous commentators have evaluated the contribution of the specialized agencies to the implementation of the UN conventions on human rights. See Samson, supra note 304, at 654-59; Matthew Craven, The International Covenant on Economic, Social and Cultural Rights: a Perspective on its Development 83-84 (1995) (evaluating contribution of specialized agencies to the CESCR).
341 In the fields of environmental protection and human rights, nongovernmental organizations (NGOs) have a long history of active participation in the work of international monitoring bodies. NGOs can be key players in gathering and disseminating information, in appraising the compliance by state parties with their international commitments and in alerting the larger public of state conduct. See Myers Mcdougal & Michael Reisman, International Law Essays: A Supplement to International Law in Contemporary Perspective 269-86 (1981) (describing the power problems inherent in a state’s gathering, evaluation and dissemination of information); Brett, supra note 325, at 121, 122; Menno Kamminga & Nigel S. Rodley, Direct Intervention at the UN: NGO Participation in the Commission on Human Rights and its Sub-Commission, in GUIDE TO International Human Rights practice supra note 237, at 186, 189-90. On the contributions of NGOs to international agreement and action on global climate change standards, see David Tolbert, Global Climate Change and the Role of International Nongovernmental Organizations, in International Law and Global Climate Change 95, 96 (Robin Churchill & David Freestone eds., 1991). For a recent analysis of the role that NGOs play in auditing state reports, see generally NGOs, THE UN, & Global Governance (Thomas Weiss & Leon Gordenker eds., 1996). Human rights committees vary in their effectiveness in working with NGOs. The participation of NGOs can serve a variety of purposes. In their advisory capacity to treaty bodies, NGOs can provide independent information on state activities in implementing international standards; mobilize public, diplomatic and political pressure to respond in relevant cases and influence the development of international standards. See Tolbert, supra at 98.
342 See Brett, supra note 325, at 121-22; Kamminga & Rodley, supra note 341, at 183 (describing the influence that NGOs have on the public agenda).
343 See Nicolas Valticos, Once More About the ILO System of Supervision: In What Respect Is It Still A Model?, in Towards More Effective Supervision by international Organizations, supra note 337, at 99, 100-01.
344 See id. at 109-10 (describing the ILO method of direct contracts, which promotes direct dialogue with member states).
345 See id. at 101 (stating that it is a characteristic of the ILO to work with “the participation of national organizations of employers and workers, on an equal footing with governments, in the adoption of instruments as well as in the supervision of their application.”).
346 see Samson, supra note 304, at 621.
347 See Valticos, supra note 343, at 107-08, 112.
348 See id. at 108-09.
349 ILO members have multiple reporting duties regarding conventions and recommendations designed to encourage rapid implementation of ILO norms. See generally Handbook of Procedures Relating to International Labour Conventions and Recommendations, ILO Doc. DEPTS\127-11.E95/V.2 (1995) [hereinafter ILO Handbook] (describing the implementation of ILO standards decided in the ILO’s November 1994 session); see also Constitution of the International Labour Organisation and Standing Orders of the International Labour Conference, at 5-25 (1994) [hereinafter ILO, Basic DOCUMENTS], Pursuant to the reporting procedures, state parties to ILO conventions are required to provide periodic detailed reports on law and practice relating to the implementation of ILO conventions that they have ratified to the Governing Body, the ILO’s executive organ. See id. at 16. In addition, governments also have a duty to report to the ILO with respect to unratified conventions and recommendations at appropriate intervals, as requested by the Governing Body. See id. at 14. Furthermore, each nation is also required to submit recommendations of the ILO to appropriate authorities. See id. By requesting these periodic reports on recommendations and unratified conventions, the ILO constitution enhances implementation in a couple of ways. First, despite the fact that such instruments are not legally binding, the constitution indicates that the substance of the convention or recommendation should still be given at least partial effect, through legislative or administrative action or otherwise. In addition, in the case of unratified conventions, the ILO constitution emphasizes the importance of formal ratification. See Toward Wider Acceptance of UN Treaties, UN Institute for Training and Research 59 (1971) (discussing the Committee’s examination of information and reports communicated by Members).
350 See ILO Handbook, supra note 349, at 22.
351 See id. at 22-23.
352 See id.
353 See id. at 22.
354 The reports of workers’ and employers’ organizations serve a critical function in this factfinding and reporting process, providing the Committee of Experts with independent verification of the veracity of information supplied by nations. Pursuant to Article 23(2) of the ILO constitution, governments must also send copies of these reports to the most representative employers’ and workers’ organizations in their countries. See ILO, BASIC Documents, supra note 349, at 16-17. This procedure enables those organizations to submit observations concerning the measures taken by their governments to meet their obligations, particularly in regards to the application of ratified conventions. See Brett, supra note 325, at 131-32 (describing the effectiveness of this procedure).
355 This approach to encouraging implementation of international standards is described by the Chief of the ILO’s Human Rights and Coordination Branch as “technical and not inflammatory.” Interview with Lee Swepston, Chief of the ILO’s Human Rights and Coordination Branch, in Geneva, Switz. (Feb. 5, 1996). For example, failure to bring municipal law in line with a convention may lead the Committee to express concern over the nonapplication of a convention. See id.
356 See ILO Handbook, supra note 349, at 24-26. The Committee of Experts and the Conference Committee function to complement each other. The Committee of Experts conducts a technical and impartial examination of the cases and the Conference Committee, whose conclusions are submitted to the plenary sitting of the annual ILO Conference, contributes the political weight and influence of an international forum in which governments, employers and workers participate. See International Labour Conference, Report III (Parts I, 2 and 3) Information and Reports on the Application of Conventions and Recommendations: Summary of Reports (Articles 19, 22 and 35 of the Constitution), 82nd Sess., Agenda Item 3, at 13-15 (1995) [hereinafter ILC, Summary of Reports].
357 See ILO, Basic Documents, supra note 349, at 8.
358 See ILO Handbook, supra note 349, at 24; Peter H. Sand, Lessons Learned in Global Environmental Governance, 18 B.C. ENVTL. Aff. L. Rev. 213, 272-73 (1991).
359 See Sand, supra note 358, at 273.
360 Conference Committee Reports contain “special paragraphs” that identify countries where there has been a continued failure to implement ratified conventions. See Leary, supra note 294, at 600.
362 See id. at 585. As Philip Alston has observed,
one of the most important features of the way in which the international human rights regime has evolved over the last two decades is the extent to which NGOs have come to be accepted not merely as partners in the overall enterprise but as indispensable ones .. . [nevertheless, many of the [human rights treaty] committees continue to have their hold outs and the result has been the evolution of an informal rather than a formal set of arrangements to facilitate NGO inputs.
Philip Alston, The Committee on Economic, Social and Cultural Rights, in THE UN AND Human RIGHTS, supra note 294, at 473, 501. For example, commentators have noted that the “most glaring omission in the work” of CEDAW is that it gives NGOs no formal role in the provision of information to Committee. See Jacobson, supra note 299, at 466-67.
363 See Samson, supra note 304, at 668-70 (describing how state resistance and other factors have historically limited the input of the specialized agencies to most of the treaty bodies and how despite improvements, obstacles still exist to the participation of the specialized agencies). A notable, but not exclusive, exception is the CESCR, which has encouraged input from the specialized agencies; see also Alston, supra note 362, at 498-500.
364 The UN human rights systems’ decision to make country-specific comments is relatively new. For example, it is only recently that the Human Rights Committee (HRC) adopted CESCR’s practice of expressing, as a treaty body, country-specific comments. See Allan Rosas & Martin Scheinin, Implementation Mechanisms and Remedies, in ECONOMIC, SOCIAL AND CULTURAL RIGHTS: A TEXTBOOK, supra note 330, at 355, 358.
365 See Alston, supra note 296, at 10. Unlike the ILO, HRC members are directly nominated and elected by the parties to the relevant treaties. See Opshal, supra note 297, at 372.
366 Rosas & Scheinin, supra note 364, at 356-57.
367 Alston, supra note 317, at 11.
368 Id.
369 Gunther Handi, Environmental Security and Global Change: The Challenge to International Law, in Environmental Protection and International Law, supra note 303, at 59, 72. The 1990 London amendments established an Implementation Committee to review allegations of noncompliance. See id.; see also Szell, supra note 303, at 99-103 (detailing the development of the compliance regime of the Montreal Protocol).
370 Birnie & Boyle, supra note 322, at 167.
371 See Alston, supra note 317, at 14-16.
372 See Szell, supra note 303, at 107; see also Daniel Bodansky, The UN Framework Convention on Climate Change: A Commentary, 18 YALE J. Int’L L. 451, 536-37 (1993) (noting that some developing countries strongly objected to international review of the energy, transportation and industrial policies).
373 See Henkin, supra note 281, at 26 (explaining that international law by nature is voluntary on the part of individual nations and controlled by national interests).
374 See Blokker & Muller, supra note 337, at 274. As Henkin has observed in the context of human rights, “the internationalization of human rights … inevitably created tensions between the new transnational concern with the rights of individuals in all countries and ingrained assumptions and habits of state autonomy.” Henkin, supra note 98, at 26.
375 See Alston, supra note 296, at 3.
In general then, the evolution of the regime has reflected specific political developments. Its expansion has depended upon the effective exploitation of the opportunities which have arisen in any given situation from the prevailing mix of public pressures, the cohesiveness or disarray of the key geopolitical blocks, the power and the number of the offending state(s) and the international standing of their current governments, and a variety of other, often rather specific and ephemeral factors. For that reason, efforts to identify and describe steady and principled patterns in the evolution of the various procedures are generally misplaced.
Id. at 3.
376 See Clare Wells, The UN, UNESCO and the Politics of Knowledge 1 (1987); Finnemore, supra note 238, at 579-81 (describing the historical shift of UNESCO from an intergovernmental organization compromised of scientists and intellectuals to a political instrument in the cold war to its domination by developing nations); Williams, supra note 7, at 62 (“UNESCO has always been the most ‘political’ of the UN agencies”); Michael J. Allen, UNESCO and the ILO: A Tale of Two Agencies, 1 J.L. ETHICS & PUB. POL’Y 391, 395 (1985) (describing how the U.S. State Department maintained that politicization in UNESCO was much greater than any other UN specialized agency). The U.S. House Committee on Foreign Affairs defined politicization as thé “introduction of highly charged, highly controversial, and extraneous issues into international debates that polarize parties to the debate and promote hostile, confrontational rhetoric that hardens positions.” Peri A. Hoffer, Upheaval in the UN System: The United States’ Withdrawal From UNESCO, 12 BROOK. J. INT’L L. 161, 164 n.l 1 (1986).
377 For a thorough analysis of the factors leading to U.S. withdrawal from the Organization, see generally Joel H. Rosenthal, Carnegie Council on Ethics and International Affairs, Case Study in Ethics and International Affairs No. 10: The Withdrawal from UNESCO: International Organizations and the U.S. Role (1990).
378 Criticism of management focused on personnel mismanagement, including long-term vacancies of permanent positions and the leadership of UNESCO’s former Director-General. See Hoffer, supra note 376, at 180-83. Criticism of budget growth focused on inadequate financial control and a runaway budget. See Allen, supra note 376, at 400. Observers have cited numerous factors to account for U.S. dissatisfaction with UNESCO on the basis of increased politicization. Included were UNESCO’s endorsement of the New World Information and Communication Order (NWICO), which purported to address the perceived monopoly of communication by large western corporations and UNESCO’s support for the Palestinian Liberation Organization and the South West African People’s Organization. See Sagarika Dutt, The Politicization of the UN Specialized Agencies: A Case Study of UNESCO 139-42, 158-59, 206-10 (1995); Giffard, supra note 233, at 19-50 (providing a thorough analysis of NWICO); Mark F. Imber, The U.S.A. ILO, UNESCO, and IAEA 96-120 (1989); Edward Mcwhinney, UN Law Making 197-205 (describing role of UNESCO in NWICO); 1 Joachim W. Müller, The Reform of the UN 29 (1992); Rosenthal, supra note 377, at 5-8.
379 See Ernst B. Haas, When Knowledge is Power 5 (1990). According to Ernst Haas, UNESCO “has never had a cohesive dominant coalition, an agreed ideology, or a commitment to an identifiable nested problem set. In fact, it is difficult to identify the problems UNESCO was to solve. It was always a garbage can.” Id. at 152. According to Haas,
[a]‘garbage can’ is a setting in which the organizational choices have to be made when issues are not clearly understood and when some participants offer solutions that do not correspond to clearly recognized problems or issues. Garbage cans are choice opportunities when ‘organizational anarchy’ prevails, when goals are either unclear or unstable, when the information supposed to elucidate the connection between ends and means is disputed or lacking, and when participation by decisionmakers is highly fluid.
Under these conditions choices are made, but they will not necessarily solve problems.
Id. at 123. Other commentators have also observed that UNESCO’s objectives are far too diffuse. Evan Luard, for example, described UNESCO’s responsibilities as “somewhat amorphous and extremely wide.” Luard, supra note 237, at 186.
380 See Haas, supra note 379, at 5.
381 The UN Association of The United States of America, American Panel on UNESCO, Schooling for Democracy: Reinventing UNESCO for The Post-Cold War World 6 (1993) [hereinafter American Panel on UNESCO].
382 Haas, supra note 379, at 5.
383 See Jay M. Vogelson, UN Educational, Scientific, and Cultural Organization, 30 Int’l Law. 676, 680 (1996).
384 In 1993, the U.S. General Accounting Office concluded that UNESCO had “demonstrated a commitment to management reform … .” Id. at 681 (citing UNESCO: Improvements in Management Practices, at 1 GAO/NSIAD-93-159).
385 See id. at 680-83; AMERICAN PANEL ON UNESCO, supra note 381, at 11-12; IMBER, supra note 378, at 109. The Organization reports that it has recently taken concrete steps to consolidate reforms and decentralize operations. See UNESCO, Medium-Term Strategy 1996-2000, supra note 236, at 262.
386 other NGOs that have advocated American reentry include the American Association for the Advancement of Science, the American Association of Museums, the American Library Association, the American Physical Society, the American Society for Microbiology and the National Academy of Sciences. See Vogelson, supra note 383, at 684.
387 In August 1995, the American Bar Association (ABA) enacted a recommendation urging the U.S. to rejoin UNESCO. See id. at 676.
388 In 1993, the United Nations Association of America (UNA) recommended that the U.S. rejoin UNESCO. See AMERICAN PANEL ON UNESCO, supra note 381, 41 app.
389 The U.S. has observer status at UNESCO, maintaining a UNESCO desk at the State Department and sending a nonvoting delegation to UNESCO’s Executive Board and Conferences. See Rosenthal, supra note 377, at 20; see also American Panel on UNESCO, supra note 381, at 19 (describing how the U.S. has remained actively involved in some of UNESCO’s programmatic activities in science). Although the Clinton administration did not seek funds for UNESCO membership in fiscal year 1996 budget, President Clinton has suggested that the U.S. would rejoin UNESCO “as soon as our resources permit.” Vogelson, supra note 383, at 685.
390 See Dutt, supra note 378, at 239-42.
391 See Report of the Director-General 1994-1995, UNESCO, 29th Sess., at Annex D, U.N. Doc. 29C/3 (1997).
392 See J.G. Starke, The UNESCO International Law-Making Process, 63 AUST. L.J. 850, 850 (1989).
393 See Stephen P. Marks, Education, Science, Culture and Information, in 2 UN Legal Order 577, 629 (Oscar Schachter & Christopher C. Joyner eds., 1995).
394 See UNESCO, BASIC TEXTS, supra note 228, at 17.
395 At its 15th session, the General Conference called on the Director-General to arrange for such reports to be examined by a subsidiary organ of the Executive Board. See Records of the General Conference, UNESCO, 15th Sess., 15/C Res. 12.2, at 106 (1968).
396 See Questions Relating to the Methods of Work of the Committee on Conventions and Recommendations, UNESCO, 146th Sess., Prov. Agenda Item 3.3, at 1, U.N. Doc. 146 EX/7 (1995).
397 See UNESCO, Rules of Procedure of The Executive Board 11 (1996).
398 See Questions Relating to the Methods of Work of the Committee on Conventions and Recommendations, supra note 396, at 1.
399 See UNESCO, Rules of Procedure of The Executive Board, supra note 397, at 9 (describing how state members of the Executive Board shall appoint a representative); see also Questions Relating to the Methods of Work of the Committee on Conventions and Recommendations, supra note 396, at 3. In the case of the UNESCO Recommendation Concerning the Status of Teachers, a joint ILO/UNESCO Committee of Experts is appointed among independent persons. See Marks, supra note 393, at 587-88. Hence, critiques of UNESCO’s general procedures for reporting are not applicable to the analysis of this Recommendation. For analysis of UNESCO’s reporting procedures, see B.G. Ramcharan, International Law and Fact-Finding in The Field of Human RIGHTS 18 (1982).
400 See Questions Relating to the Methods of Work of the Committee on Conventions and Recommendations, supra note 396, at 1. The Committee also examines communications relating to human rights violations within UNESCO’s field of competence. See UNESCO, Basic Texts, supra note 228, at 11; see also Questions Relating to the Methods of Work of the Committee on Conventions and Recommendations, supra note 396, at Annex III p. 5 (describing what is outside of UNESCO’s field of competence). For analysis of UNESCO’s complaint procedures, see generally Georges Henri Dumont, UNESCO’s Practical Action in the Field of Human Rights, 122 INT’L SOC. SCI. J. 585 (1989); Marks, The Complaints Procedures of the United Nations Educational, Scientific and Cultural Organization, supra note 237; Weisbrodt & Farley, supra note 236. Although extensive analysis of UNESCO complaint procedures is beyond the scope of this Article, it is important to note that it has also been the subject of much criticism. According to observers, UNESCO’s communications mechanism, which is “shrouded in secrecy,” functions in “near total obscurity” as a result of the Committee’s rules on confidentiality and lack of publicity about its work. See Weisbrodt & Farley, supra note 236, at 391. Scholars have suggested that the procedure has not been implemented properly because the UNESCO process has “not been subjected to the glare of public pressure.” Id. at 397. For confidentiality rules for UNESCO’s complaint procedures, see Questions Relating to the Methods of Work of the Committee on Conventions and Recommendations, supra note 396, at Annex III p. 5. Breach of confidentiality by a complainant results in the dismissal of the complaint. See id. The Committee does not adopt written conclusions, and does not even provide public information about the number and the nature of the rights allegedly violated. See Report by the Committee of Conventions and Recommendations, UNESCO, Item 4.2, U.N. Doc. 147 EX/53 (1995). The complaints procedure has been described as “either not used … [or] found to be a waste of time by potential complainants.” Marks, supra note 393, at 624; see also Economic Social and Cultural Rights: a Textbook, supra note 330, at 371 (suggesting that UNESCO’s confidential complaint procedures have “had no practical significance”).
401 See Questions Relating to the Methods of Work of the Committee on Conventions and Recommendations, supra note 396, at 1.
402 For instance, the Convention for the Protection of Cultural Property in the Event of Armed Conflict of 1954 establishes Commissioners-General for Cultural Property to monitor the application of the Convention. The Hague Convention for the Protection of Cultural Property in the Event of Armed Conflict, May 19, 1954, 249 UNTS 358 (entered into force August 7, 1956). The Commissioner- General has the right to order an investigation or conduct one himself. See generally Ramcharan, supra note 399, at 18. Stephen Marks reports that this procedure operated “with great difficulty” in the 1967 Arab/Israeli War, the 1991 Gulf War, and the 1992 civil war in the former Yugoslavia. See Marks, supra note 393, at 623.
403 Interview with Stephen P. Marks, Professor at Columbia University, New York, N.Y. (Apr. 24, 1997).
404 Marks, supra note 393, at 624.
405 Frederic Kirgis has noted that reporting on recommendations “appears no better observed than in the case of UNESCO conventions” Id. at 581 (quoting Frederic Kirgis, Specialized Law Making Processes, in 2 UN LEGAL Order, supra note 393, at ch. 2. The inherent weakness of UNESCO’s current supervisory procedures and standard-setting procedures is illustrated by examining experience with its four major treaties. Difficulties in implementing the World Heritage Convention, UNESCO’s most well known treaty, have led to continuous discussions since the early 1980s on means to improve the implementation procedures. See Tenth General Assembly of States Parties to the Convention Concerning the Protection of the World Cultural and Natural Heritage, UNESCO, Prov. Agenda Item 10, at 2, U.N. Doc. WHC-95/CONF.204/7 (1995); Report of the Expert Meeting on ‘Approaches to the Monitoring of World Heritage Properties: Exploring Ways and Means’, UNESCO, Convention Concerning the Protection of the World Cultural and Natural Heritage, World Heritage Comm., 17th Sess., at 1, U.N. Doc. WHC-93/CONF.002/INF.5 (1993) (suggesting that the “authority and the integrity of the World Heritage Convention will be compromised” unless more effective means are established to implement the recommendations of the World Heritage Committee (WHC)). Currently, Article 29 of the Convention calls for parties to submit reports to the General Conference pursuant to UNESCO’s constitutional reporting requirements. As described above, the General Conference has delegated the responsibility to review state reports to the Committee on Conventions and Recommendations (CCR). Current proposals for reform center upon the creation of a strengthened monitoring process under the auspices of the WHC. See Monitoring and Reporting on the State of Conservation of the Properties Inscribed on the World Heritage List, Report of the Rapporteur, UNESCO, Convention Concerning the Protection of the World Cultural and Natural Heritage, Bureau of the World Heritage Committee, 20th Sess., Prov. Agenda Item 8, Annex II, U.N. Doc. WHC- 96/CONF.202/10 (1996).
UNESCO’s 1970 Convention for the Protection of Moveable Cultural Property, which mandates periodic reporting on the application of the instrument to the General Conference, was largely ignored by states, with a few significant exceptions, including the U.S. See 1970 UNESCO Convention on the Means of Prohibiting and Preventing the Illicit Import, Export and Transfer of Ownership of Cultural Property, Nov. 14, 1970, 823 U.N.T.S. 231, at art. 16; Marina Schneider, The UNIDROIT Convention on Stolen or Illegally Exported Cultural Objects 6 (Nov. 28, 1995) <http://www.city.ac.uk/artspol/schneider.html>. The reporting procedures, which were undertaken by the CCR in 1978, proved ineffective in stimulating national action and the reporting process was abandoned. See Komblum, supra note 303, at 64. The weaknesses of the UNESCO convention led to the creation of a new instrument under the auspices of UNIDROIT. See Nina R. Lenzer, The Illicit International Trade in Cultural Property: Does the UNIDROIT Convention Provide an Effective Remedy for the Shortcomings of the UNESCO Convention?, 15 U. PA. L. REV. 469, 478-85 (1994).
The 1954 Convention for the Protection of Cultural Property in the Event of Armed Conflict requires that state parties submit reports on application of the Convention every four years. See JlRI Toman, The Protection of Cultural Property in the Event of Armed Conflict 39-44 (1954). Commentators note that the reporting process has achieved about a 20% compliance rate and less than half of UNESCO’s member states are not party to the treaty. See Komblum, supra note 303, at 62; Vogelson, supra note 383, at 678. The Convention has been described as “a useless piece - a useless document that nobody pays any attention to.” W. Hays Parks, Remarks at A Symposium for the Destruction and Rebuilding of Architectural Treasures in Bosnia and Herzegovina, Conference Committee of the Carnegie Endowment for International Peace and Security (May 2, 1994).
UNESCO also administers the Universal Copyright Convention (UCC). Universal Copyright Convention, as revised, July 24, 1971, 25 U.S.T. 1341, 943 U.N.T.S. 78. Critics have argued that the UCC and other relevant treaties have not established an effective global copyright regime because they do not include meaningful systems for encouraging compliance. See Marshall A. Leaffer, Protecting United States Intellectual Property Abroad: Toward a New Mutltilateralism, 76 IOWA L. Rev. 273, 294 (1991). UNESCO shares authority in the copyright realm with the World Intellectual Property Organization (WIPO). The major treaties in this area, including the Berne Convention, are administered by WIPO. See id. at 292-93.
406 See Marks, supra note 393, at 629.
407 See Vogelson, supra note 383, at 678.
408 See birnie & Boyle, supra note 322, at 26-27.
409 As Judge Lauterpacht observed in his separate opinion in the Norwegian Loans case in 1957, “Unquestionably, the obligation to act in accordance with good faith, being a general principle of law, is also a part of international law.” Case of Certain Norwegian Loans (France v. Norway), 1957 I.C.J. REP. 9, 53 (July 6, 1957) (separate opinion of Judge Lauterpacht).
410 See Birnie & BOYLE, supra note 322, at 16.
411 See id. at 16-17; see also Meredith Wadman & Declan Butler, UNESCO Declaration Lacks Legal Teeth, 391 Nature 219, 219 (1998) (finding that “[pjressure for international agreements counts for little unless there is national government will to implement them.”).
412 See Schermers & Blokker, supra note 247, at 758; UNESCO, Basic Texts, supra note 228, at 11. By virtue of their respective constitutions, the ILO and UNESCO require member states to submit recommendations to “competent authorities” within 18 months of their adoption. See Schermers & Blokker, supra note 247, at 793. Not surprisingly, UNESCO has a less impressive record than the ILO in achieving compliance with this requirement. The degree of compliance with the UNESCO procedure appears to be about 10%. See id. at 794.
413 See Report by the Director-General on the Possibility of Drawing Up an International Instrument on the Protection of the Human Genome, supra note 242, at 16. As described above, recommendations and declarations are nonbinding instruments that are frequently indistinguishable from each other. See SCHERMERS & BLOKKER, supra note 247, at 754. In terms of substance, recommendations and declarations are also similar. “Recommendations propose changes to the rule of law, whereas declarations are statements that particular legal rules exist.” Id. at 754. As a procedural matter, however, there are important differences between UNESCO declarations and recommendations. “[I]n the drafting, adoption and implementation of U[NESCO] declarations, no rule of procedure similar to the [UNESCO] Rules of Procedure concerning Recommendations to Member States and International Conventions is followed: unlike the latter, declarations are adopted by an ordinary resolution of the General Conference.” UNESCO, Standard-Setting Instruments, supra note 245, at XIV.
414 See Meron, supra note 304, at 215 (stating that “[c]onflicts can arise when two organizations claim to have competence over a particular matter, and when one organization which lacks competence over a particular matter encroaches upon the domain of the competent organization or of a state.”).
415 Elsewhere this author has noted, that in contrast to the evolution of international cooperation and the harmonization of state behavior in the environment and human rights, decision making in international public health remains steeped in the statist model of international law. See Taylor, An International Regulatory Strategy, supra note 94, at 284 n.178. Despite the global interdependence of public health conditions, international public health law is functionalist in nature, limited primarily to technical concerns. See id. Globalization of public health conditions has led, however, to notable evolution in international public health law in the last couple of decades. See Taylor ET AL., supra note 186.
416 See Henkin, supra note 281, at 228-39 (analyzing development of international human rights law); Jonathan Charley, Universal International Law, 87 AM. J. INT’L L. 529, 529 (1993); A.A. Cacao Trindade, The Contribution of International Human Rights Law to Environmental Protection, with Special Reference to Global Environmental Change, in Environmental Change and International Law, supra note 303, at 244, 245-50 (describing how the increasing need of nations to cooperate to solve essential problems in a number of realms, including human rights and environmental protection, has made inroads on the traditional concept of state sovereignty).
417 For example, the wide range of supervisory institutions and procedures used in international protection of civil and political rights, including the complaint and inspection procedures, do not generally exist for the surveillance of the implementation of state obligations related to the protection and promotion of economic and social rights. This reflects, in part, the more limited level of acceptance of economic and social rights by the world community. See Rosas & Scheinen, supra note 364, at 355 (describing international implementation of economic and social rights as at a “more embryonic stage” than those in place for civil and political rights). Similarly, the wide array of monitoring procedures and mechanisms used to promote human rights “does not yet exist for the promotion of international obligations related to the environment, revealing the more tentative and still recent commitment of states to environmental protection.” BlRNiE & BOYLE, supra note 322, at 164. According to one authority, in the context of environmental agreements, “non-compliance as a process is still in its infancy.” Szill, supra note 303, at 106.
418 See Whittaker, supra note 47, at 2077.
419 See Council of Europe, supra note 144, at *1.
420 See id. at *4.
421 See Blokker & Muller, supra note 337, at 280-81.
422 See id.
423 See Birnie & Boyle, supra note 322, at 16.
424 See Blokker & Muller, supra note 337, at 279-80.
425 See Vogelson, supra note 383, at 683-84.
426 See Weisbrodt & Farley, supra note 236, at 411.
427 See id.
428 See Marks, supra note 393, at 624 (suggesting that many of the problems that plague UNESCO’s supervisory procedures are similar to problems that haunt international supervision in general).
429 Schachter, supra note 310, at 19.
430 See UNESCO, Medium-Term STRATEGY 1996-2001, supra note 236, at 2-4.
431 See UNESCO, Presentation of the Declaration on the Human Genome, supra note 248, at 1-2.
432 See Blokker & Muller, supra note 337, at 290 (discussing the difference between supervisory organs made up of government officials and those made up of individual persons).
433 A variety of factors suggest that the UNESCO’s CCR is not an appropriate or effective body for this task. To begin with, the CCR is not a delegation of independent experts acting in their personal capacity, but a political body consisting of state representatives. Further, members of the CCR lack the technical expertise in human rights, bioethics and technology necessary for an effective auditing process for international standards on the human genome and human rights. Finally, experience shows that the CCR been largely ineffective in stimulating compliance with other UNESCO instruments and that it has received neither the financial nor the institutional support necessary to change existing practices from either the UNESCO Secretariat or member states. Notably, the creation and use of supervisory bodies other than the CCR to monitor implementation of UNESCO treaties is not without precedent. As described above, several UNESCO conventions provide for alternative institutions for supervision of state reports, including the Convention for the Protection of Cultural Property in the Event of Armed Conflict. See supra note 402 and accompanying text.
434 Indeed, the failure of the CCR to review state reports seriously has been identified as one of the underlying weaknesses of UNESCO’s current procedures. See supra notes 403-11 and accompanying text.
435 See Alston, supra note 362, at 506-08.
436 See id. at 507.
437 UNESCO’s current practice of reprinting state reports without critical analysis from either the CCR or the General Conference has been ineffective in stimulating national compliance with norms created under the Organization’s auspices. See supra notes 413-20 and accompanying text.
438 See Jacobson, supra note 299, at 459.
439 See Alston, supra note 362, at 508.
440 See id. Alston notes that, in practice, a consensus evaluation is emerging from this process. See id.
441 See Alston, supra note 317, at 13.
442 As described above, the UN human rights committees generally require that member states submit reports on enumerated rights at four to five year intervals. The ILO has established a complex procedure whereby member states must submit detailed reports on 10 “priority” conventions every two years. Simplified reports are requested every five years on all other ILO conventions. Pursuant to procedural requirements, the ILO Committee of Experts can also request detailed nonperiodic reports from member nations on any convention of the Organization. See ILO Handbook, supra note 349, at 15.
443 See Dimitrijevic, supra note 327, at 13.
444 See Rosalyn Higgens, The UN: Still a Force for Peace, 52 MOD. L. Rev. 1,19 (1989).
445 See Laurie Wiseberg, Human Rights Information and Documentation, in Manual on Human Rights Reporting, supra note 317, at 29,29.
446 See Pocar & Bernard, supra note 330, at 25.
447 See Peter M. Haas, International Environmental Issues 39 (1991) (describing the influence of publication of scientific information in developing consensus for the Montreal Protocol).
448 See Sand, supra note 358, at 233 (describing the effectiveness of publicizing national compliance with United Nations Environmental Programme (UNEP)-sponsored treaties).
449 See Chayes & Chayes, supra note 309, at 10.
450 See id. at 10-17.
451 See Barbara B. Crane, International Population Institutions: Adaptations to a Changing World Order, in Institutions for The Earth: Sources of Effective Environmental Protection 351, 390-92 (Peter M. Haas et al. eds., 1993) [hereinafter Institutions for The Earth].
452 The issue of capacity may arise any time a treaty establishes an affirmative commitment. Supervisory procedures and technical and financial assistance, among other things, can effectively “merge in the process of jawboning - an effort to persuade” states in violation of international commitments to change their ways. Chayes & Chayes, supra note 309, at 204.
453 See Marc A. Levy et al., Improving the Effectiveness of International Environmental Institutions, in Institutions for The Earth, supra note 451, at 397, 414-15.
454 See Chayes & Chayes, supra note 309, at 197-201.
455 Alternative types of procedures should be established if the failure to meet reporting obligations reflects the absence of political will. The submission of timely and complete reports by states is clearly central to the integrity of the reporting process. Procedures can be established to empower the monitoring body to request additional information from governments to supplement incomplete reports or to follow up on questions raised by the supervisory committee. See Dimitrijevic, supra note 327, at 14-15 (discussing the ability of states to comply with reporting obligations).
456 See Chayes & Chayes, supra note 309, at 198.
457 See Cecil Bernard, The Preparation and Drafting of a National Report, in Manual on Human Rights Reporting, supra note 317, at 17,19-20.
458 The UN High Commissioner for Human Rights has encouraged countries to establish independent bioethics committees. See Human Rights and Bioethics, supra note 256.
459 Declaration, supra note 3, at art. 16. On UNESCO efforts to promote national bioethics institutions, see generally Espiell, supra note 282.
460 See Byrk, supra note 177, at 375. Such institutions also vary among states, but are in some cases established as permanent, autonomous institutions. See id.
461 See id.-, The Possibility of Drawing Up an International Instrument on the Protection of the Human Genome and Human Rights, Report by the Director-General, supra note 242, at 2.
462 An autonomous bioethics institution with the capacity to initiate its own investigations and make recommendations to appropriate officials or organizations may be better able than an international organization to make a significant contribution to ensuring that vulnerable groups are given a public voice and that human rights violations become a matter of general knowledge. Such institutions also can use a wide variety of promotional techniques to draw public and media attention to their findings and to encourage appropriate consideration of human rights obligations by national authorities. National bioethics institutions also can ensure that their findings and views on public policy concerns raised by genetic developments are made public and disseminated widely.
463 See supra notes 174-85 and accompanying text.
464 See E. Najera et al., Health for All as a Strategy and the Role of Health Legislation: Some Issues and Views, 37 Int’l Dig. Health Legis. 362, 363 (1986); Taylor, supra note 88, at 308-09.
465 Chayes & Chayes, supra note 309, at 194.
466 See Finnemore, supra note 238, at 587, 590.
467 See supra note 245-47 and accompanying text.
468 See Finnemore, supra note 238, at 586. UNESCO promoted the establishment of national science policy institutions in a variety of ways, including undertaking studies on a series of science policy issues, organizing meetings among states that had created a science policy machinery and by providing on-site technical consulting programs on how science policy could be developed. See id.
469 See Declaration, supra, note 3, at 7.
470 Marks, supra note 393, at 625. “Stephen Krasner defines international regimes as principles, norms, rules, and decision-making procedures around which actor expectations converge in a given issue area.” 36 Int’l Org. 185-206 (1982), cited in Marks, supra note 393, at 625 n.197. Such institutions include the Intergovernmental Council of the International Hydrological Programme, the Intergovernmental Oceanographic Commission, the International Coordinating Council of the Programme on Man and the Biosphere and the International Geological Correlation Programme. See Marks, supra note 393, at 626-27. Marks noted that the “behaviour of states is sometimes affected more decisively [through these institutions] than through a normative instrument” adopted by UNESCO. Id. at 625.
472 But c.f. Louis Henkin, The UN and Human Rights, 19 Int’L OrG. 504, 514 (1965) (explaining that “[f]or the most part, human rights can only be promoted indirectly” by international organizations).
473 See Chamovitz, supra note 294, at 173 (suggesting that the experience of other international organizations evinces that the linking of technical assistance to nations based on problems, deficiencies and priorities identified by the supervisory body can provide a powerful incentive to nations to implement international commitments). For example, the importance of the ILO supervisory process has been underscored by its efforts to integrate standard setting and technical assistance. For a description of ILO technical assistance efforts, see Report VI: The Role of The ILO in Technical Cooperation, International Labour Conference, 80th Sess. (1993). All technical assistance by the ILO to member nations is aimed at furthering the implementation of ILO norms. For example, the ILO provides technical assistance to developing nations to help them in drafting legislation that will ensure conformity with ILO conventions that they have ratified. It also maintains a system of regional advisors on labor standards and organizes regional seminars on standards. See Bahadar Shah, Impact of ILO Conventions on Labour Laws in Pakistan, 48 PAKISTAN HORIZON 81, 85 (1995); see ILC, Summary of Reports, supra note 356, at 16-17. No comparable efforts are used by the UN supervisory bodies to promote implementation of human rights. See generally Leary, supra note 294 (analyzing the impact of ILO technical assistance on nations).