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Prenatal Genetic Testing and Screening: Constructing Needs and Reinforcing Inequities

Published online by Cambridge University Press:  24 February 2021

Abby Lippman
Abby Lippman*
Affiliation:
Dep't of Epidemiology & Biostatistics, McGill University
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Abstract

This Article considers the influence and implications of the application of genetic technologies to definitions of disease and to the treatment of illness. The concept of “geneticization” is introduced to emphasize the dominant discourse in today's stories of health and disease and the social construction of biological phenomenon is described. The reassurance, choice and control supposedly provided by prenatal genetic testing and screening are critically examined, and their role in constructing the need for such technology is addressed. Using the stories told about prenatal diagnosis as a focus, the consequences of a genetic perspective for and on women and their health care needs are explored.

Type
Articles
Information
American Journal of Law & Medicine , Volume 17 , Issue 1-2: The Human Genome Initiative and the Impact of Genetic Testing and Screening Technologies , 1991 , pp. 15 - 50
Copyright
Copyright © American Society of Law, Medicine and Ethics and Boston University 1991

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Footnotes

*

Prenatal diagnosis, the focus of much of this paper, is troublesome for all women, users and critics alike. In no way do I intend my remarks about it to reflect on women who have considered or undergone testing; criticism of the technologies is not to be read as criticisms of them. Women considering childbearing today face agonizing issues I was fortunate enough not to have to confront, and I can only admire their resilience and strength.

References

1 See infra notes 20-26 and accompanying text for a discussion of these techniques.

2 In this Article, the word “stories” is not used to suggest that what is said is not true (this may or may not be the case). Rather it is used in a literary, not a legal, sense to capture the idea that how scientists present their observations and study results is no different from how novelists present their interpretations of the external world. “Raw” material is shaped and interpreted to convey a message by both groups, with their constructions reflecting the prevailing social/cultural context. Further, to the degree that the same story is repeated and becomes accepted and used, it will itself begin to shape this context.

3 I attempt, in this way, to enter “an old text from a new critical direction.” RICH, A., When We Dead Awaken, in ON LIES, SECRETS AND SILENCE 35 (1979)Google Scholar. I consider how stories about prenatal diagnosis both reflect and affect the social process of geneticization, how they emerge from existing cultural values at the same time as they interactively influence this very culture, altering our values, redefining our reality. See infra notes 101-40 and accompanying text. Using the biomedical and social science literature, and switching analogies, I want to create a “femmage,” a “sister concept” to the collage, wherein a composite describing these stories is created from multiple sources. See S. PRICE, PRIMITIVE ART IN CIVILIZED PLACES 4 (1989) (quoting Meyer, & Shapiro, , Waste Not, Want Not: An Inquiry into What Women Saved and Assembled, 4 HERESIES 66–69 (1978)Google Scholar).

4 It should be emphasized that the priority given to matters of health is historically dependent and determined on a local level. These issues may not warrant political, economic or scientific attention in all places or at all times. A malady that is diagnosed and treated as a prevalent disease in one country may be diagnosed and treated completely differently in another country. See generally L. PAYER, MEDICINE & CULTURE (1988).

5 See THE PROBLEM OF MEDICAL KNOWLEDGE: EXAMINING THE SOCIAL CONSTRUCTION OF MEDICINE (P. Wright & A. Treacher eds. 1982) [hereinafter THE PROBLEM OF MEDICAL KNOWLEDGE]; LOCK, M. & GORDON, D., Relationship Between Society, Culture, and Biomedicine: Introduction to the Essays, in BIOMEDICINE EXAMINED 11, 11–18Google Scholar (M. Lock & D. Gordon eds. 1988); Taussig, , Reifkation and the Consciousness of the Patient, 14 Soc. Sci. & MED. 3, 3Google Scholar (through reification, “disease is recruited into serving the ideological needs of the social order“); Young, , The Anthropologies of Illness and Sickness, 2 ANN. REV. ANTHROPOLOGY 257 (1982)Google Scholar [hereinafter The Anthropologies of Illness and Sickness]; Young, , When Rational Men Fall Sick: An Inquiry into Some Assumptions Made by Medical Anthropologists, 5 CULTURE MED. & PSYCHOLOGY 317 (1981)Google Scholar [hereinafter When Rational Men Fall Sick]; see also Young, , Rational Men and the Explanatory Model Approach, 6 CULTURE, MED. & PSYCHOLOGY 57 (1982)Google Scholar [hereinafter Rational Man and the Explanatory Model Approach ] (containing Young's replies to comments directed toward When Rational Men Fall Sick, supra).

6 See generally S. TESH, HIDDEN ARGUMENTS: POLITICAL IDEOLOGY AND DISEASE PREVENTION POLICY 3 (1988) (“there is an inextricable interrelationship between facts and values, both in the search for the causes of disease and in the process of developing the best preventive policy“).

7 See Laurell, , Social Analysis of Collective Health in Latin America, 28 Soc Sci. & MED. 1183 (1989)Google Scholar; M. LOCK, Mind, Matter and Middle Age: Ideologies for the Second Sex, to be published in ANALYSIS IN MEDICAL ANTHROPOLOGY (S. Lindenbaum & M. Lock eds.).

8 See Winner, , Is There Any Light Under Our Bushel? Three Modest Proposals for S.T.S., 10 BULL. SCI. TECH. & SOC'Y 12 (1990)Google Scholar.

9 Woolhandler, & Himmelstein, , Ideology in Medical Science: Class in the Clinic, 28 Soc. Sci. & MED. 1205, 1206 (1989)Google Scholar.

10 See generally H. LONGINO, SCIENCE AS SOCIAL KNOWLEDGE: VALUES AND OBJECTIVITY IN SCIENTIFIC INQUIRY (1990).

11 E.g., Chui, , Wong, & Scriver, , The Thalassemias and Health Care in Canada: A Place for Genetics in Medicine, 144 CANADIAN MED. ASS'NJ. 21 (1991)Google Scholar; Koshland, , The Rational Approach to the Irrational, 250 SCIENCE 189 (1990)Google Scholar; Stead, , Senner, , Reddick, & Lofgren, , Racial Differences in Susceptibility to Infection by Mycobacterium Tuberculosis, 322 NEW ENG. J. MED. 422, 426 (1990)Google Scholar; Watson, , The Human Genome Project: Past, Present, and Future, 248 SCIENCE 44 (1990)Google Scholar.

12 E.g., Alexander, The Gene Hunt, TIME, Mar. 20, 1989, at 52; Beers, The Gene Screen, VOGUE, June 1990, at 236, 237; Montgomery, The Ultimate Medicine, DISCOVER, Mar. 1990, at 60; Schmeck, Battling the Legacy of Illness, N.Y. TIMES GOOD HEALTH MAGAZINE, Apr. 28, 1990, at 36.

13 See Council for Responsible Genetics, Position Paper on Genetic Discrimination, 3 ISSUES REPRODUCTIVE & GENETIC ENGINEERING 287 (1990)Google Scholar (criticizing the “blueprint” notion); Newman, , Idealist Biology, 31 PERSPECTIVES BIOLOGY & MED. 353, 361 (1988)Google Scholar (DNA is one component of a “complex dynamical system,” not a “command center” that is impervious to environmental input); Rose, , Human Perfectability, 2 LANCET 1380, 1380-81 (1984)Google Scholar (emphasizing the effects of environment on DNA). See generally G. LAKOFF & M.JOHNSON, METAPHORS WE LIVE BY (1980).

14 Baird, , Genetics and Health Care: A Paradigm Shift, 33 PERSPECTIVES BIOLOGY & MED. 203, 203-04 (1990)Google Scholar.

15 see Lippman, Genetics and Public Health: Means, Goals and Justices, to be published in AM. J. HUM. GENETICS (1991) [hereinafter Genetics and Public Health]; Lippman, , Messing, & Mayer, , Is Genome Mapping the Way to Improve Canadians’ Health?, 81 CANADIAN J . PUB. HEALTH 397, 398 (1990)Google Scholar (noting that “undirected” studies of, for instance, “environmental protection against genotoxicants or of nutritional supplementation during pregnancy,” will suffer financially because funds are going to human genome mapping).

16 A. Lippman, La “Geneticization” de la Vie (unpublished manuscript presented at Seminaire, Lalonde-les-Maures, France, May, 1990). A few years ago, in an article only recently rediscovered, Edlin described a process he called “geneticizing” to refer to the tendency to label as “genetic” diseases and disorders “of possible polygenic-multifactorial origin” for which there was, in fact, “scant or no genetic evidence.” Edlin, , Inappropriate Use of Genetic Terminology in Medical Research: A Public Health Issue, 31 PERSPECTIVES BIOLOGY & MED. 47, 48 (1987)Google Scholar. He argued that geneticizing led to premature categorization of diseases as genetic, and caused research funds to be allocated to genetic research to the detriment of other research. Id. at 48. I have deliberately chosen not to resurrect his term, since the processes I want to describe go beyond those that he emphasized. In this regard, too, the concept of geneticization goes beyond Yoxen's discussion of the “construction” of genetic disease. Yoxen, Constructing Genetic Diseases, in THE PROBLEM OF MEDICAL KNOWLEDGE, supra note 5, at 144. Apparently, the term “geneticism” was used even earlier in an essay by Sir Peter Medawar also to describe the inappropriate genetic labeling of variations between peopie. Medawar, , The Genetic Improvements of Man, 18 AUSTRALASIAN ANNALS MED. 317, 319 (1969)Google Scholar.

17 See R. HUBBARD, THE POLITICS OF WOMEN's BIOLOGY 52 (1990) (noting that in a less individualized society than ours, people might find many aspects of biology “more interesting than heredity, genes and … DNA“); Murphy, , The Logic of Medicine, 66 AM. J. MED. 907, 908 (1979)Google Scholar (warning against a “narrow concern with single genes” that “destroys our vision of the human organism“).

18 T. DUSTER, BACKDOOR TO EUGENICS 2 (1990). Duster defines the “prism of heritability” as a “way of perceiving traits and behaviors that attributes the major explanatory power to biological inheritance.” Id. at 164. In this definition, he is very close to Edlin's “geneticizing.” See supra note 16. However, only when Duster notes, but without detailed development of the theme, that labels will determine how we choose to respond to a problem, does he begin to incorporate all that I place under the rubric of geneticization. The concept of geneticization explicitly makes this an essential part of the process.

19 Rapp, , The Power of “Positive” Diagnosis: Medical and Maternal Discourses on Amniocentesis, in CHILDBIRTH IN AMERICA: ANTHROPOLOGICAL PERSPECTIVES 103, 105 (K. Michaelson ed. 1988)Google Scholar [hereinafter CHILDBIRTH IN AMERICA]. See generally R. BLATT, PRENATAL TESTS: WHAT THEY ARE, THEIR BENEFITS AND RISKS, AND HOW TO DECIDE WHETHER TO HAVE THEM OR NOT (1988).

20 In amniocentesis, a hollow needle is inserted through a woman's abdomen and into the amniotic sac in order to remove a small sample of the fluid that surrounds the developing fetus. The procedure is usually preceded by an ultrasound examination to document the age of the fetus and its location so that an appropriate site for insertion of the amniocentesis needle can be chosen. The fluid that is removed — amniotic fluid — contains cells from the fetus that, if allowed to divide in the laboratory, can then be analyzed. In particular, one can count the number of chromosomes in the cells, determine fetal sex and carry out biochemical and specific genetic analyses on these cells. Amniocentesis is performed at about sixteen to twenty weeks’ gestation, the second trimester of pregnancy: before this time not enough fluid or enough cells are available. Once a fluid sample has been obtained, there is a further three to four week wait for the analyses to be completed and results to be available, since it takes this long to grow a sufficient number of cells for study. Thus, if a fetus is found to be affected with the condition for which testing was done and the woman chooses to abort the pregnancy, the abortion is not induced until about the twentieth week, which is halfway through the pregnancy. See E. NIGHTINGALE & M. GOODMAN, BEFORE BIRTH: PRENATAL TESTING FOR GENETIC DISEASE 32-35 (1990) [hereinafter BEFORE BIRTH]. Recent technical developments that allow diagnoses to be made following amplification of the genetic material in a single cell can shorten considerably the time needed to obtain results. See infra note 23 and accompanying text.

21 See infra note 67 and accompanying text for a discussion of the social, rather than biological, bases for categorizing women over 35 as “at risk.“

22 Over 150 “single gene” disorders can now be detected, and testing may be carried out for women who have a documented family history of one of these or who are otherwise known to be at increased risk. Testing is not carried out for these disorders without specific indications. See generally Antonarakis, , Diagnosis of Genetic Disorders at the DNA Level, 320 NEW ENG. J. MED. 153 (1989)Google Scholar (reviewing recent progress in identifying single gene disorders).

23 In chorionic villus sampling (CVS), a small tube (catheter) is inserted through the vagina and cervix. It is then advanced, under ultrasound guidance, until it reaches the placenta, from which a small amount of tissue (chorionic villi) is removed. Some obstetricians now obtain a sample through a needle inserted into the abdomen instead. Any chromosomal or biochemical disorder can, in theory, be diagnosed with tissues obtained by CVS, because the cells of the fetus and placenta (which are formed from chorionic villi) are genetically the same. See Vekemans, & Perry, , Cytogenic Analysis of Chorionic Villi: A Technical Assessment, 72 HUM. GENETICS 307 (1986)Google Scholar. This procedure was first used successfully in China as early as 1975 to determine fetal sex. Tietung Hosp. Dep't of Obstetrics & Gynecology, Fetal Sex Prediction by Sex Chromatin of Chorionic Villi Cells During Early Pregnancy, 1 CHINESE MED. J. 117 (1975)Google Scholar. CVS can be done as early as eight or nine weeks after a woman's last menstrual period and, while the results of tests carried out on the placental tissue can be available within hours, a two or three day waiting period is usually required. See BEFORE BIRTH, supra note 20, at 35-36. If a woman chooses to abort the pregnancy following CVS, the abortion can be carried out in the first trimester. Finally, CVS does not appear more likely to cause a spontaneous abortion than amniocentesis. Canadian Collaborative CVS - Amniocentesis Clinical Trial Group, Multicentre Randomised Clinical Trial of Chorion Villus Sampling and Amniocentesis, 1 LANCET 1, 4 (1989)Google Scholar.

24 During an ultrasound examination, high frequency sound waves are projected into the uterus; the sound waves that are reflected back are resolved visually to allow one to “see” the fetus on a television-like display screen. A. OAKLEY, THE CAPTURED WOMB: A HISTORY OF THE MEDICAL CARE OF PREGNANT WOMEN 155-68 (1984).

25 See BEFORE BIRTH, supra note 20, at 31-32. A consensus development conference in the United States recently recommended reserving the use of ultrasound for pregnancies that may require it for specific medical reasons. PUB. HEALTH SERV., U.S. DEP't OF HEALTH & HUM. SERVS., CONSENSUS DEVELOPMENT CONFERENCE: DIAGNOSTIC ULTRASOUND IMAGING IN PREGNANCY 11 (National Inst, of Health Publication No. 667, 1984). This recommendation is clearly not being followed and, at present, in many major North American teaching hospitals, almost all pregnant women are referred for two “routine” ultrasound examinations — one before the twentieth week and one in the third trimester — for purposes of dating the pregnancy, even though the benefits of such a policy have not been established. Even more frequent scans are considered routine in France. As a specific tool for prenatal diagnosis, ultrasound can be used to identify certain malformations such as neural tube defects, cleft lip, or limb shortening in fetuses known to be at risk for one of these abnormalities. It can also be used to identify fetal sex. Most subtle malformations will not be identified when ultrasound is applied routinely on a non-diagnostic basis, however; the detailed examination that would be necessary requires more than the time that is usually allowed (or the machinery that is employed) when the primary goal is pregnancy dating. Nevertheless, some fetal problems can be diagnosed and their recognition may influence subsequent decisions about how pregnancy is managed.

26 See Chervenak, , McCullough, & Chervenak, , Prenatal Informed Consent for Sonogram, 161 AM. J. OBSTETRICS & GYNECOLOGY 857, 860 (1989)Google Scholar; Lippman, , Access to Prenatal Screening: Who Decides?, 1 CANADIAN J. WOMEN L. 434 (1986)Google Scholar [hereinafter Who Decides﹜]. Chervenak and colleagues have recently called attention to the issue of informed consent for ultrasound, but their conclusions are troublesome. They consider the pregnant woman “the patient's fiduciary,” the “patient” to them being the fetus. Chervenak, McCullough & Chervenak, supra, at 858. This suggests that the consent process they propose will be coercive.

It is also worth noting that ultrasound is no longer the only genetic technology applied without prior consent. Screening for carriers of hemoglobin disorders, for example, is also done unbeknownst to the individuals being tested in certain jurisdictions. See Rowley, Loader, Sutera, & Walden, , Do Pregant Women Benefit from Hemoglobinopathy Carrier Detection?, 565 ANNALS N.Y. ACADEMY SCIENCES 152, 153 (1989)Google Scholar [hereinafter Rowley]. These authors noted that consent for sickle cell and other hemoglobinopathies was not obtained because: “Consent for screening was not routinely sought; providers agreed that obtaining timely informed consent required counseling approaching that to be provided to identified carriers and many providers declined to participate if they had to obtain it.” Rowley, supra, at 153.

27 See generally Who Decides?, supra note 26, at 434.

28 Id.

29 See, e.g., Kolker, , Advances in Prenatal Diagnosis: Social-psychological and Policy Issues, 5 INT'L J. TECH. ASSESSMENT HEALTH CARE 601 (1989)Google Scholar; see also Dalgaard, & Norby, , Autosomal Dominant Polycystic Kidney Disease in the 1980s, 36 CLINICAL GENETICS 320, 324 (1989)Google Scholar (placing importance on “selective reproduction prevention“).

30 See PRESIDENT's COMM'N FOR THE STUDY OF ETHICAL PROBLEMS IN MEDICAL AND BIOMEDICAL AND BEHAVIORAL RESEARCH, SCREENING AND COUNSELING FOR GENETIC CONDITIONS: THE ETHICAL, SOCIAL, AND LEGAL IMPLICATIONS OF GENETIC SCREENING, COUNSELING, AND EDUCATION PROGRAMS 55 (1983) [hereinafter PRESIDENT's COMM'N] (“In sum, the fundamental value of genetic screening and counseling is their ability to enhance the opportunities for the individual to obtain information about their personal health and childbearing risks and to make autonomous and noncoerced choices based on that information.“).

31 See B. ROTHMAN, RECREATING MOTHERHOOD: IDEOLOGY AND TECHNOLOGY IN A PATRIARCHAL SOCIETY 21 (1989) (describing the “commodification of life, towards treating people and parts of people … as commodities … . We work hard, some of us, at making the perfect product, what one of the doctors in the childbirth movement calls a ‘blue ribbon baby.’ “). See also Ewing, , Australian Perspectives on Embryo Experimentation: An Update, 3 ISSUES REPRODUCTIVE & GENETIC ENGINEERING 119 (1990)Google Scholar; Rothman, The Decision to Have or Not to Have Amniocentesis for Prenatal Diagnosis, in CHILDBIRTH IN AMERICA, supra note 19, at 92, 92-98.

32 See Hill, , Your Morality or Mine? An Inquiry into the Ethics of Human Reproduction, 154 AM. J. OBSTETRICS & GYNECOLOGY 1173, 1178-80 (1986)Google Scholar.

33 See generally ROYAL COLLEGE OF PHYSICIANS OF LONDON, PRENATAL DIAGNOSIS AND GENETIC SCREENING: COMMUNITY AND SERVICE IMPLICATIONS (1989).

34 See, e.g.. WOMEN's RIGHTS LITIGATION CLINIC, REPRODUCTIVE LAWS FOR THE 1990s: A BRIEFING HANDBOOK (1987); Who Decides?, supra note 26, at 438.

35 McDonough, , Congenital Disability and Medical Research: The Development of Amniocentesis, 16 WOMEN & HEALTH 137, 143-44 (1990)Google Scholar. McDonough notes that three rationales for amniocentesis emerged from her survey: “The procedure offered those at risk the possibility of ‘health’ … . [it] provided parents with reassurance and avoided abortion … . [and it] prevented] disease and disability.” Id.

36 See, e.g., McClain, , Perceived Risk and Choice of Childbirth Service, 17 Soc. Sci. & MED. 1857, 1862 (1983)Google Scholar.

37 There is no evidence that control, autonomy and reassurance are actually enhanced and not merely assumed to occur. In fact, there have been very few in-depth studies in this area, and the conclusions of these investigations seem to vary with the orientation of the investigator. Studies reported in the social science and feminist literature suggest that prenatal diagnosis removes control; studies reported in the biomedical literature are interpreted to show how reassurance is provided. For an overview of these studies, see Lippman, Research Studies in Applied Human Genetics: A Quantitative Analysis and Critical Review of Recent (Biomedical) Literature, to be published in AM. J. MED. GENETICS (1991). Much more ethnographic work in this area is required.

38 See infra text accompanying notes 48-51 for a reconstruction of the notion of reassurance.

39 See supra notes 31-32 and accompanying text.

40 This issue is discussed in A. Lippman, Led Astray by Genetic Maps (speech given, Ottawa, Ganada, 1991). Treatment, often said to be a goal of early identification of affected fetuses, becomes even less likely with CVS. Pharmaceutical companies will not be motivated to invest in developing treatments for conditions that “need not occur.” Rarely will they base business decisions on their social worth rather than on their financial value.

This situation contains elements of an unusual conflict. Increasingly, geneticists are promising to have treatments available for a wide range of disorders and, for some conditions, therapeutic developments have occurred which make them far more benign than previously. The promises, and the available examples, are likely to to be sufficiently persuasive that women “at-risk” may either make use of prenatal diagnosis less frequently or see less reason to abort an affected fetus than today. Yet, at the same time, the very availability of prenatal diagnosis and abortion may be seen as justifications for not investing in the further development of these therapies that parents will have been led to expect. Cf Varekamp, Suurmeijer, Brocker-Vriends, Van Dijck, Smit, Rosendaal, & Briët, , Carrier Testing and Prenatal Diagnosis for Hemophilia: Experiences and Attitudes of 549 Potential and Obligate Carriers, 37 AM. J. MED. GENETICS 147, 153 (1990)Google Scholar [hereinafter Varekamp] (noting decrease in hemophilia screening as treatment capabilities increased).

41 See Bell, , Prenatal Diagnosis: Current Status and Future Trends, in HUMAN GENETIC INFORMATION: SCIENCE, LAW & ETHICS 18-36 (Ciba Foundation Series 1990)Google Scholar. See also Kolker, supra note 29, at 612 (prevention is “clearly cheaper than providing services for those with genetic disorders“); Modell, , Cystic Fibrosis Screening and Community Genetics, 27 J. MED. GEN. 475, 476 (1990)Google Scholar (“undesirable [diseases] may be all but eradicated“); Dalgaard & Norby, supra note 29, at 323-24 (“access to selective reproductive prevention” is important).

42 S. WYMELENBERG, SCIENCE AND BABIES: PRIVATE DECISIONS, PUBLIC DILEMMAS 130 (1990).

43 In fact, some consider the combined procedures of in vitro fertilization and embryo diagnosis to be “ethically better” than prenatal diagnosis for detecting problems because it “avoids” abortion. See Michael, & Buckle, , Screening for Genetic Disorders: Therapeutic Abortion and IVF, 16 J. MED. ETHICS 43 (1990)Google Scholar. But see]. TESTART, LE MONDE DIPLOMATIQUE 24 (1990) (suggesting that it is the very need to consider abortion (“de terribles responsabilites) that is perhaps the best safeguard against ordinary eugenics (“l'eugenisme ordinaire“)).

44 Brambati, , Formigli, , Tului, & Simoni, , Selective Reduction of Quadruplet Pregnancy at Risk of B-Thalassemia, 336 LANCET 1325, 1326 (1990)Google Scholar.

45 If nothing else, it is certainly preferable for their public image if geneticists are seen as reassuring women, rather than selecting their offspring.

46 Much of importance has been written about the link between prenatal diagnosis and allocaeugenics; this dialogue, despite its importance, will not be repeated here. See generally T. DUSTER, supra note 18; R. HUBBARD, supra note 17; Degener, , Female Self-determination Between Feminist Claims and “Voluntary” Eugenics, Between “Rights” and Ethics, 3 ISSUES REPRODUCTIVE & GENETIC ENGINEERING 87 (1990)Google Scholar; Hubbard, , Eugenics: New Tools, Old Ideas, 13 WOMEN & HEALTH 225 (1987)Google Scholar.

47 This point is not merely an argument of critics of prenatal diagnosis. Shaw, a geneticist-lawyer who strongly defends the principle of fetal protection, has written that “any counselor who explains reproductive alternatives and offers a prenatal test to a counselee is a practicing eugenicist and any couple who chooses to avoid having babies with chromosome abnormalities or deleterious mutant genes is also practicing eugenics.” Shaw, , Letter to the Editor: Response to Hayden: Presymptomatic and Prenatal Testing, 28 AM. J. MED. GENETICS 765, 765-66 (1987)Google Scholar.

48 Rothschild, , Engineering Birth: Toward the Perfectability of Man?, in 2 SCIENCE, TECHNOLOGY AND SOCIAL PROGRESS 93 (Goldman, S. ed. 1989)Google Scholar.

49 See Anon, WIC Program Shows Major Benefits, NATION's HEALTH, Dec. 1990, at 3.

50 See Farrant, , Who's for Amniocentesis? The Politics of Prenatal Screening, in THE SEXUAL POLITICS OF REPRODUCTION 96, 120Google Scholar (H. Homans ed. 1985) [hereinafter THE SEXUAL POLITICS OF REPRODUCTION].

51 See Yankauer, , What Infant Mortality Tells Us, 80 AM. J. PUB.. HEALTH 653 (1990)Google Scholar.

52 While those in need are identified explicitly as (certain) pregnant women, it is worth noting that clinical geneticists, themselves, have a need for this technology, too. For instance, when a child is born with a malformation, geneticists likely feel most “helpful” when prenatal diagnosis, a technological palliative for the pains of etiologic ignorance, can be offered. Saying that the malformation is not likely to happen again, given the usually low empiric recurrence risks associated with most of these problems, is not nearly as comforting for genetic counselors as is offering in utero detection. Counselors “need” this technique for the satisfactory performance of their jobs no less than they believe a family “needs” prenatal diagnosis to prevent the birth of a second affected child.

53 See Lippman, , Prenatal Diagnosis: Reproductive Choice? Reproductive Control?, [hereinafter Reproductive Choice?] in THE FUTURE OF HUMAN REPRODUCTION 182, 187 (Overall, C. ed. 1989)Google Scholar [hereinafter THE FUTURE OF HUMAN REPRODUCTION] (consideration of prenatal diagnosis as a professional resource).

54 See Nsiah-Jefferson, , Reproductive Laws, Women of Color and Low Income Women in REPRODUCTIVE LAWS FOR THE 1990s 17, 17–58 (Cohen, S. & Taub, N. eds. 1988)Google Scholar [hereinafter REPRODUCTIVE LAWS FOR THE 1990s] (discussing potential areas of cultural conflict in genetic counseling).

55 There is an extensive literature on “medicalization” in general and on the medicalization of pregnancy and childbirth per se in which this discussion is rooted and from which it derives guidance. See, e.g., A. OAKLEY, supra note 24, at 275. (“The medicalization of everyday life is a phenomenon described in many radical and liberal critiques of medicine.“); id. at 276 (“For both birth and death normal signs have become neon lights flagging risks which demand and validate medical intervention.“); Raymond, , Feminist Ethics, Ecology, and Vision, in TEST-TUBE WOMEN 427, 427-37 (Arditti, R., Klein, R. & Minden, S. eds. 1984)Google Scholar [hereinafter TEST-TUBE WOMEN]; I. ZOLA, Healthism and Disabling Medicalization, in I. ILLICH, I. ZOLA, J. MCKNIGHT, J. CAPLAN & H. SHAIKEN, DISABLING PROFESSIONS 41 (1977); Zola, , In the Name of Health and Illness: On Some Socio-Political Consequences of Medical Influence, 9 Soc Sci. & MED. 83, 85–87 (1975)Google Scholar (noting that control by medical value not achieved through political means but by “medicalization“); Zola, , Medicine as an Institution of Social Control, 20 SOCIOLOGY REV. 487 (1972)Google Scholar; see also Lewin, By Design: Reproductive Strategies and the Meaning of Motherhood, in SEXUAL POLITICS OF REPRODUCTION, supra note 50, at 123, 123-38 (1985) (women “must adapt” to “motherhood” but can also approach it as “active strategists“).

56 See Oakley, , Smoking in Pregnancy: Smokescreen or Risk Factor? Towards a Materialist Analysis, 11 SOCIOLOGY HEALTH & ILLNESS 311 (1989)Google Scholar.

57 See Farrant, supra note 50, at 96; Oakley, supra note 56, at 311.

58 See R. HATCHER & H. THOMPSON, SATISFACTION WITH OBSTETRICAL CARE AMONG CANADIAN WOMEN (Health Servs. Res. Unit, Department of Community Health, Queen's Univ., Kingston, Ontario 1987) (results of a survey showing pregnant women's reluctance to question medical authority).

59 See Lippman, supra note 53, at 182. Physicians may pressure women into being tested, even using false information to do so. Marteau, Kidd, Cook, Michie, Johnston, Slack, & Shaw, , Perceived Risk not Actual Risk Predicts Uptake of Amniocentesis, 96 BRIT. J. OBSTETRICS & GYNAECOLOGY 739 (1989)Google Scholar.

60 See Hubbard, & Henifin, , Genetic Screening of Prospective Parents and of Workers: Some Scientific and Social Issues, 15 INT'L J. HEALTH SERVS. 231 (1985)Google Scholar; Rothman, The Meaning of Choice in Reproductive Technology, in TEST-TUBE WOMEN, supra note 55, at 23. I have previously discussed the “burden” of decisionmaking in the context of genetic counseling and a similar “burden” would seem to exist here. See Lippman-Hand, & Fraser, , Genetic Counseling I: Parents’ Perceptions of Uncertainty, 4 AM. J. MED. GENETICS 51, 58–63 (1979)Google Scholar [hereinafter Genetic Counseling I]; Lippman-Hand, & Fraser, , Genetic Counseling II: Making Reproductive Choices, 4 AM. J. MED. GENETICS 73 (1978)Google Scholar [hereinafter Genetic Counseling II]. This theme is present in contemporary literature as demonstrated by Goldstein's reference to the “momentous decision” that childbearing now involves. R. GOLDSTEIN, THE MIND-BODY PROBLEM 200 (1983).

Hubbard and Henifin, in fact, identify a “new Catch-22” wherein participating in a genetic screening program may lead to a person's being identified as a “genetic deviant,” but failure to participate (or to abort a fetus diagnosed with a disorder in utero) may lead to her being labeled as a “social deviant.” Hubbard & Henifin, supra, at 231-48.

61 The degree of this burden is demonstrated by the frequency with which women queried about their reasons for having prenatal diagnosis say that they “had no choice.” Sjögren, & Uddenberg, , Decision Making During the Prenatal Diagnostic Procedure, 8 PRENATAL DIAGNOSIS 263 (1988)Google Scholar. See Kirejczyk, , A Question of Meaning? Controversies About the NRT's in the Netherlands, 3 ISSUES REPRODUCTIVE & GENETIC ENGINEERING 23 (1990)Google Scholar (individuals often accept a medical technique because of fear that they might later regret not having done so); see also A. FINGER, PAST DUE: A STORY OF DISABILITY, PREGNANCY AND BIRTH (1990); Beck-Gernsheim, , From the Pill to Test-Tube Babies: New Options, New Pressures in Reproductive Behavior, in HEALING TECHNOLOGY: FEMINIST PERSPECTIVES 23 (1988)Google Scholar [hereinafter HEALING TECHNOLOGY]; Rapp, , Moral Pioneers: Women, Men and Fetuses in a Frontier of Reproductive Technology, 13 WOMEN & HEALTH 101 (1987)Google Scholar.

62 B. ROTHMAN, supra note 31, at 92-97. Women are expected to behave in accordance with norms set up by those in power. See Rodgers, Pregnancy as Justifications for Loss of Judicial Autonomy, in THE FUTURE OF HUMAN REPRODUCTION, supra note 53, at 174.

63 See, e.g., Fleischer, , Ready for Any Sacrifice? Women in IVF Programmes, 3 ISSUES REPRODUCTIVE & GENETIC ENGINEERING 1 (1990)Google Scholar (referring to a “code of good conduct” pregnant women ought to follow); see also M. DE KONINCK & F: SAILLANT, ESSAI SUR LA SANTÉ DES FEMMES (Conseil du Statut de la femme 1981); A. QUÉNIART, LE CORPS PARADOXAL: REGARDS DE FEMMES SUR LA MATERNITÉ (1988); Simkin, , Childbearing in Social Context, 15 WOMEN & HEALTH 5 (1989)Google Scholar (all discussing the ideology of risk and behavioral expectations in pregnancy).

64 See B. ROTHMAN, supra note 31, at 92; Leuzinger, & Rambert, , “I Can Feel It — My Baby Is Healthy:” Women's Experiences with Prenatal Diagnosis in Switzerland, 1 ISSUES REPRODUCTIVE & GENETIC ENGINEERING 1153 (1988)Google Scholar.

65 Cf Levran, , Dor, , Rudak, , Nebel, , Ben-Shlomo, , Ben-Rafael, & Mashiach, , Pregnancy Potential of Human Oocytes — The Effect of Cryopreservalion, 323 NEW ENG. J. MED. 1153, 1154 (1990)Google Scholar [hereinafter Levran]; Sauer, , Paulson, & Lobo, , A Preliminary Report on Oocyte Donation Extending Reproductive Potential to Women Over 40, 323 NEW ENG. J . MED. 1157, 1159 (1990)Google Scholar.

66 See generally R. BLATT, supra note 19; A. Lippman, supra note 40.

67 See Fuhrmann, , Impact, Logistics and Prospects of Traditional Prenatal Diagnosis, 36 CLINICAL GENETICS 378, 380 (1988)Google Scholar. This categorization is more a cultural than biological creation. See Bourret, , Le temps, l‘espace en Génétique: Intervention Médicale et Géographique Sociale du gène, 6 SCIENCES SOCIALES ET SANTÉ 171 (1988)Google Scholar; A. Lippman, The Geneticization of Health and Illness: Implications for Social Practice (manuscript in preparation based on presentation at National Ass'n for Science, Tech. & Soc'y, Washington, D.C., Feb. 2, 1991). It reflects prevailing ideas about the kinds of children women should have and when the probability for them is or is not diminished. See Finkelstein, Biomedicine and Technocratic Power, HASTINGS CENTER REP. 1990, at 13, 14-16; see also infra note 86 for a discussion of the role of genetics in creating these ideas.

Age has thus become more than an event, a birthday; it has been redefined as a marker, a risk, although nothing inherent in it makes it so. See Fuhrmann, supra, at 380 (35 is the crucial age in North America); J. Moatti, J. Lanoë, C LeGales, H. Gardent, C Julian & S. Aymé, Economic Assessment of Prenatal Diagnosis in France (unpublished manuscript presented at Joint Meeting of European Health Economic Societies, Barcelona, Spain, Sept. 21-23, 1989) (age 38 in France); Sjögren & Uddenberg, supra note 61, at 263 (age 37 in Sweden). This age marker may even serve to stigmatize the “older” woman. See Hubbard & Henifin, supra note 60, at 238 (1985). Further discussion of the arbitrariness of age 35 as a criterion for access to prenatal diagnosis can be found in Who Decides﹜, supra note 26, at 434; Vekemans, & Lippman, , Letter to the Editor: Eligibility Criteria for Amniocentesis, 17 AM. J. MED. GENETICS 531 (1986)Google Scholar.

68 The many ways in which the concept of “risk” is itself a cultural creation, unfortunately, cannot be given the attention they deserve here. However, it is useful to recall that the data used to assign people to risk categories reflects the information we choose to collect, and the problems that interest the collector. Alexander & Keirse, Formal Risk Scoring, in 1 EFFECTIVE CARE IN PREGNANCY AND CHILDBIRTH 345, 346-47 (I. Chalmers & M. Keirse eds. 1989). It is also important to note that changes in the nature and number of things counted as risks are more prevalent than changes in the actual number of people “at-risk“; and that even using the term “risk” to describe an event or experience is politically and socially dependent. Cf. L. WINNER, THE WHALE AND THE REACTOR: A SEARCH FOR LIMITS IN AN AGE OF HIGH TECHNOLOGY 142 (1986) (discussing risks versus hazards).

69 See Botkin, , Prenatal Screening: Professional Standards and the Limits of Parental Choice, 75 OBSTETRICS & GYNECOLOGY 875 (1990)Google Scholar; Shiloh, & Sagi, , Effect of Framing on the Perception of Genetic Recurrence Risks, 33 AM. J. MED. GENETICS 130 (1989)Google Scholar.

70 A. Lippman, supra note 40. Human genome projects comprise the organized and directed international and national programs to map and sequence all human genes. Some of these genes will be associated with recognizable disorders; others will be associated with biological variations of varying and mostly unknown consequence. See generally McKusick, , Mapping and Sequencing the Human Genome, 320 NEW ENG. J. MED. 910 (1989)Google Scholar; Watson, supra note 11 at 44. Differences between people will be identified, and while knowing the location and composition of human genes will add to our information about the latter, it will not reveal how the person with these genes will “turn out.” See supra notes 13-14 and accompanying text for a critical discussion of the limits of the genetic model.

71 Cf. Vallgarda, , Increased Obstetric Activity: A New Meaning to “Induced Labor?”, 43 J. EPIDEMIOLOGY & COMMUNITY HEALTH 48, 51 (1989)Google Scholar (hypothesizing that, among other factors, the availability of new technologies such as electronic fetal monitoring leads to an increased number of interventions by practitioners).

72 This may be an example of what Tversky and Kahnemann have called the “availability” heuristic. Tversky, & Kahneman, , Availability: A Heuristic for Judging Frequency and Probability, 5 COGNITIVE PSYCHOLOGY 207 (1973)Google Scholar. That is, having become familiar through constant reference to it and to prenatal diagnosis, Down syndrome may be perceived by the general population as “worse” and as more frequent than it is statistically.

73 Until recently, the frequency of births of children with Down syndrome to women of different ages was the sole basis for estimating individual risks. Within the past few years, investigators have identified certain substances in blood samples from pregnant women that show a statistical association with the chromosomal status of the fetus. This additional information is now beginning to be used in conjunction with maternal age to estimate risks for Down syndrome. In some cases these data will increase a woman's putative risk above that associated with her age alone; in others, it will decrease it. When the numerical value of this risk equals or surpasses that associated with maternal age 35 alone, (“35-equivalent“), prenatal diagnosis is generally offered. See Wald, & Cuckle, , AFP and Age Screening for Down Syndrome, 31 AM. J. MED. GENETICS 197 (1988)Google Scholar.

74 J. GREEN, CALMING OR HARMING? A CRITICAL REVIEW OF PSYCHOLOGICAL EFFECTS OF FETAL DIAGNOSIS ON PREGNANT WOMEN (Galton Inst. 2d Series 1990). In this context, the notion of “iatrogenic anxiety” would seem pertinent. This anxiety may develop when laboratory analyses reveal chromosomal variations never before reported whose significance is unknown. The prevalence of iatrogenic anxiety among women being tested may be substantial, but its extent is currently unknown.

75 See Lippman, supra note 37.

76 See, e.g., Modell, , Cystic Fibrosis Screening and Community Genetics, 27 J. MED. GENETICS 475Google Scholar (“Cystic fibrosis … is fast becoming preventable … . [because] [t]he gene in which mutation can lead to CF … has recently been identified … [This creates] an imminent need to set up population screening for CF carriers.“).

77 See, e.g., N. ZILL & C. SCHOENBORN, DEVELOPMENTAL, LEARNINC, AND EMOTIONAL PROBLEMS: HEALTH OF OUR NATION's CHILDREN 190 (National Center for Health Statistics, Nov., 1990).

78 See H. LONGINO, SCIENCE AS SOCIAL KNOWLEDGE: VALUES AND OBJECTIVITY IN SCIENTIFIC INQUIRY 38, 38-48 (1990).

79 See Armstrong, , The Invention of Infant Mortality, 8 SOCIOLOGY HEALTH & ILLNESS 211 (1986)Google Scholar (the idea of infant mortality was created by new measuring tools in statistics); Armstrong, , Use of the Genealogical Method in the Exploration of Chronic Illness: A Research Note, 30 Soc. Sci. & MED. 1225 (1990)Google Scholar (how increases in chronic disease are constructed).

80 Children with malformations and medical disorders will always be born, and avoiding their birth via prenatal diagnosis does not address the issue of preventing these problems or of ameliorating their effects on the child or the family. The former will require interventions that reduce environmental mutagens and teratogens, for example; the latter elicits interventions which have already been discussed. See supra text accompanying notes 42-44.

81 See R. HUBBARD, supra note 17, at 198.

82 See Beck-Gernsheim, supra note 61, at 28-29 (“It is characteristic that new technologies, once available, produce new standards of what we ought to have.“); Lippman, supra note 53, at 182 (discussing professional establishment of criteria for testing and physicians’ desires to comply with perceived medical standards).

83 These techniques are likely to be driven by financial considerations of the pharmaceutical companies developing them. See, e.g., D. NELKIN & L. TANCREDI, DANGEROUS DIAGNOSTICS: THE SOCIAL POWER OF BIOLOGICAL INFORMATION 33-36 (1989); A. Lippman, supra note 40; cf. Note, Patents for Critical Pharmaceuticals: The AZT Case, 17 AM. J.L. & MED. 145 (1991)Google Scholar (analyzing the validity of pharmaceutical companies’ claims that without a federally-granted monopoly, they would not have the incentive to research and develop orphan drugs).

84 See Shiloh, , Waisbren, & Levy, , A Psychosocial Model of a Medical Problem: Maternal PKU, 10 J. PRIMARY PREVENTION 51 (1989)Google Scholar.

85 For thorough analyses of the question of women's control, see generally Rapp, , Chromosomes and Communication: The Discourse of Genetic Counseling, 2 MED. ANTHROPOLOGY Q. 143 (1988)Google Scholar.

86 In fact, the availability of amniocentesis “influenced legislation so that the upper limit of gestational age for legally tolerated termination of pregnancy was adjusted to the requirements of second trimester prenatal diagnosis in several countries.” Fuhrmann, supra note 67, and 378. Evidently, geneticists can accomplish what women's groups cannot: a revisioning of abortion.

87 The term “social control” is used in accord with its original use to embrace “the widest range of influence and regulation imposed by society upon the individual.” D. GORDON, Clinical Science and Clinical Expertise: Changing Boundaries Between Art and Science in Medicine, in BIOMEDICINE EXAMINED, supra note 5, at 257.

88 Reproductive Choice?', supra note 53, at 187-192.

89 Finkelstein, supra note 65, at 14-16.

90 Fetal abnormality as grounds for abortion is of fairly recent vintage, having first become “legal” in the United States in 1967 in response to a rubella epidemic. The Canadian Medical Association gave its approval the same year. Beck, , Eugenic Abortion: An Ethical Critique, 143 CANADIAN MED. ASS'N J. 181, 181-84 (1990)Google Scholar. Today, members of the general population as well as physicians regularly and strongly agree’ that fetal abnormality is a justification for abortion. See Annas, , The Supreme Court, Privacy and Abortion, 321 NEW ENG. J . MED. 1200 (1989)Google Scholar; Breslau, , Abortion of Defective Fetuses: Attitudes of Mothers of Congenitally Impaired Children, 49 J. MARRIAGE FAMILY 839 (1987)Google Scholar; Varekamp, supra note 40, at 147.

91 See Fuhrmann, supra note 67, at 383-84. A recent example of the use of genetics to set social policy in this area is the position taken by the American Society of Human Genetics with respect to possible restrictions on abortion under consideration in various parts of the United States. This professional group has proposed as model legislation

that any pregnant female whose pregnancy has not reached the point of viability and who has been informed by a licensed or certified health care professional that her fetus (or fetuses) is/are likely to have a serious genetic or congenital disorder shall have the right, among other options, to choose to terminate her pregnancy. This right shall extend to situations where the female is at significantly increased risk for bearing a child with a serious disorder for which precise prenatal diagnosis is not available.

Letter from Phillip J. Riley to the author. The merits for/against this position aside, it certainly demonstrates how geneticists seek to influence the resolution of fundamentally political, legal (and ethical) problems.

92 Nsiah-Jeflerson, supra note 54, at 31-37, 39-41.

93 Billings, Genetic Discrimination: An Ongoing Survey, GENEWATCH, May 1990, at 7-15.

94 See Billings, Kohn, de Cuevas & Beckwith, Genetic Discrimination As a Consequence of Genetic Screening, to be published in AM. J. HUM. GENETICS (1991); see also Gostin, , Genetic Discrimination: The Use of Genetically Based Diagnostic and Prognostic Tests by Employers and Insurers, 17 AM. J.L. & MED. 109 (1991)Google Scholar.

95 Brody, A Search to Ban Retardation in a New Generation, N.Y. Times, June 7, 1990, at B9, col. 1 (citing Carol Kaufman) (the four states are Massachusetts, Montana, Texas and Washington). PKU reflects an inability to metabolize phenylalanine properly. It can be controlled by dietary restrictions.

96 Drugen, , Greb, , Johnson, & Krivchenia, , Determinants of Parental Decisions to Abort for Chromosomal Abnormalities, 10 PRENATAL DIAGNOSIS 483 (1990)Google Scholar.

97 See Genetic Counseling I, supra note 60, at 51; Genetic Counseling II, supra note 60, at 73; Harper, & Harris, , Editorial: Medical Genetics in China: A Western View, 23 J. MED. GENETICS 385, 386–388 (1986)Google Scholar (noting role of “genetic counselor as arbiter for permission to have additional children in China” or to abort child); Rapp, supra note 85, at 143 (analyzing messages conveyed in genetic counseling discourse); see also Puck, , Some Considerations Bearing on the Doctrine of Self-Fulfilling Prophecy in Sex Chromosome Aneuploidy, 9 AM. J. MED. GENETICS 129 (1981)Google Scholar (noting use of term “syndrome” in prenatal diagnosis).

98 Holmes-Seidle, , Ryynanen, & Lindenbaum, , Parental Decisions Regarding Termination of Pregnancy Following Prenatal Detection of Sex Chromosome Abnormality, 7 PRENATAL DIAGNOSIS 239, 241–243 (1987)Google Scholar. See also Robinson, , Bender, & Linden, , Decisions Following the Intrauterine Diagnosis of Sex Chromosome Aneuploidy, 34 AM. J. MED. GENETICS 552 (1989)Google Scholar. This raises an interesting question for the future as screening is further routinized and moves increasingly from geneticists to obstetricians.

99 Lorenz, , Botti, , Schmidt, & Ladda, , Encouraging Patients to Undergo Prenatal Genetic Testing Before the Day of Amniocentesis, 30 J. REPRODUCTIVE MED. 933 (1985)Google Scholar.

100 As possibilities for screening and testing expand, so, too, will the need to provide genetic counseling services to participants. The size of the resources required to do this appropriately may be enormous, if existing models for genetic counseling are to be followed. See Fraser, , Genetic Counseling, 26 AM. J. HUM. GENETICS 636 (1974)Google Scholar. The consequences may also be enormous — however the programs are designed.

101 Kranzberg, , The Uses of History in Studies of Science, Technology and Society, 10 BULL. SCI. TECH. & Soc. 6 (1990)Google Scholar. These technologies are not neutral objects waiting for us to make good or evil use of them. Rather, the “politics embodied in material things” from the very start, Winner, supra note 8, a t 12, give them “valence” and make it essential to understand the social context in which a new device or practice is offered. Bush, Women and the Assessment of Technology: To Think, To Be; To Unthink, To Free, in MACHINA EX DEA: FEMINIST PERSPECTIVES ON TECHNOLOGY 154, 154-56 (J. Rothschild ed. 1983) [hereinafter MACHINA EX DEA]. The context, itself, not only influences the technologies we choose to develop but also presupposes certain approaches to their use. In turn, the use of any given technology will change the context, will change us. Technology is like a “new organism insinuating itself and altering us irrevocably.” Boone, Bad Axioms in Genetic Engineering, HASTINGS CENTER REP., Aug.-Sept. 1988, at 9.

102 This issue is presented in fairly general terms here without the in-depth consideration that is being (and will be) developed elsewhere in the context of my larger project.

103 Waxier, The Social Labeling Perspective on Illness and Medical Practices, in THE RELEVENCE OF SOCIAL SCIENCE TO MEDICINE 283 (L. Eisenberg & A. Kleinman eds. 1980); The Anthropologies of Illness and Sickness, supra note 5, a t 257; Rational Men and The Explanatory Model Approach, supra note 5, at 57 .

104 A recent example is the differential in rates of substance abuse reporting during pregnancy to public health authorities in Florida, with poor women being reported more often condithan others. Chasnoff, , Landress, & Barrett, , The Prevalence of Illicit Drug or Alcohol Use During Pregnancy and Discrepancies in Mandatory Reporting in Pinellas County, Florida, 322 NEW ENC. J. MED. 1202 (1990)Google Scholar. See also L. WHITEFORD & M. POLAND, Introduction, in NEW APPROACHES TO HUMAN REPRODUCTION 1 (L. Whiteford & M. Poland eds. 1989).

105 See Townsend, , Individual or Social Responsibility for Premature Death? Current Controversies in the British Debate About Health, 20 INT'LJ. HEALTH SERVS. 373, 382-84 (1990)Google Scholar (noting that life style is not just a matter of choice, and presenting an analysis of the many forces that shape what we too easily call choice); cf Rosen, , Hanning, & Wall, , Changing Smoking Habits in Sweden: Towards Better Health, But Not for All, 19 INT'L J. EPIDEMIOLOGY 316 (1990)Google Scholar (providing example of where education contributes to increased inequities in health).

106 Rational Men and the Explanatory Model Approach, supra note 5, at 57.

107 See Kickbusch, , Self-Care in Health Promotion, 29 Soc. Sci. & MED. 125 (1989)Google Scholar.

108 Other stratifications of consequence here based on ability, race, etc. are considered elsewhere. See generally A. Lippman, supra note 40; T. DUSTER, supra note 18 (emphasizing racial and ethnic strata). In addition, inequities attached to genetic screening and testing relating to employment discrimination, insurance refusals and racial prejudice, for example, have been considered in detail elsewhere and these situations will not be reviewed specfically here. See, e.g., T. DUSTER, supra note 18; N. HOLTZMAN, PROCEED WITH CAUTION: PREDICTING GENETIC RISKS IN THE RECOMBINANT DNA ERA (1989); Billings, supra note 93, at 7, 15; Council for Responsible Genetics, supra note 13, at 287.

109 Some even suggest that they have been developed and used specifically to maintain gendered distinctions and increase patriarchal power. See, e.g., Morgan, Of Woman Born? How Old Fashioned! — New Reproductive Technologies and Women's Oppression, in THE FUTURE OF HUMAN REPRODUCTION, supra note 53, at 60; Rowland, Reproductive Technologies: The Final Solution to the Woman Question?, in TEST-TUBE WOMEN, supra note 55, at 356.

110 See L. WHITEFORD & M. POLAND, NEW APPROACHES TO HUMAN REPRODUCTION 1, 8-9 (1989); Raymond, Reproductive Gifts and Gift Giving: The Altruistic Woman, HASTINGS CENTER REP., Nov.-Dec, 1990 at 7; see also supra note 61.

111 See, e.g., M. WARREN, GENDERCIDE: THE IMPLICATIONS OF SEX SELECTION (1985); Hoskins & Holmes, Technology and Prenatal Femicide, in TEST-TUBE WOMEN, supra note 55, at 237; Rothschild, supra note 48, at 107.

112 E.g., Fletcher, Is Sex Selection Ethical?, in RESEARCH ETHICS 333 (K. Berg & K. Tranoy eds. 1983); Wertz, & Fletcher, , Ethics and Medical Genetics in the United States: A National Survey, 29 AM. J. MED. GENETICS 815, 821 (1988)Google Scholar (Table V).

113 Who Decides?, supra note 26, at 434; Reproductive Choice?, supra note 53, at 182.

114 Raymond, Introduction, in THE CUSTOM-MADE CHILD? WOMEN CENTERED PERSPECTIVES 177 (H. Holmes, B. Hoskins & M. Gross eds. 1981) (defining previctimization as “the spectre of women being destroyed and sacrificed before even being born“).

115 See generally G. COREA, R. KLEIN, J. HANMER, H. HOLMES, B. HOSKINS, M. KISHWAR, J. RAYMOND, R. ROWLAND & R. STEINBACHER, MAN-MADE WOMEN: HOW NEW REPRODUCTIVE TECHNOLOGIES AFFECT WOMEN (1987); Hanmer, Reproductive Technology: The Future for Women?, in MACHINA EX DEA, supra note 101, at 183, 191 (“The questions of social scientists imply that sex predetermination is an accepted and acceptable idea. It is just a matter of finding out which method is preferred and when and how many children are desired.“); Rowland, , Technology and Motherhood: Reproductive Choice Reconsidered, 12 SIGNS 512 (1987)Google Scholar.

116 Cf. E. MARTIN, THE WOMAN IN THE BODY: A CULTURAL ANALYSIS OF REPRODUCTION (1987).

117 D. NELKIN & L. TANCREDI, supra note 83, at 17 (testing creates social categories “in order to preserve existing social arrangements and to enhance the control of certain groups over others“).

118 See supra notes 67-71 and accompanying text.

119 These circumventions pale in comparison to the variety of pharmaceutical and surgical methods that can be applied to remove all age limits on the possibility of pregnancy for a woman. See, e.g., Levran, supra note 65, at 1153; Sauer, Paulson & Lobo, supra note 63, at 1157.

120 Hook, , Cross, & Schreinemachers, , Chromosomal Abnormality Rates at Amniocentesis and in Live-Born Infants, 249 J. A.M.A. 2034 (1983)Google Scholar.

121 Hubbard & Henifin, supra note 60, at 238.

122 R. HUBBARD, supra note 17; Hubbard, Personal Courage Is Not Enough: Some Hazards of Childbearing in the 1980s, in TEST-TUBE WOMEN, supra note 55, at 331, 339. When amniocentesis was first introduced, 40 years was the age cut-off. This has dropped to 35 in North America, and recommendations that it be lowered further have been made. PRESIDENT's COMM'N, supra note 30, at 81; Crandell, , Lebherz, & Tabsh, , Maternal Age and Amniocentesis: Should This Be Lowered to 30 Years?, 6 PRENATAL DIAGNOSIS 237, 241 (1986)Google Scholar.

123 See supra note 73.

124 See Rindfuss & Bumpass, Age and the Sociology of Fertility: How Old Is Too Old?, in SOCIAL DEMOGRAPHY 43 (K. Taueber, L. Bumpass & J. Seven eds. 1978) (providing an overview of social definitions of childbearing age).

125 Its impact on their experience of pregnancy is enormous but will not be considered here. See Beeson, Technological Rhythms in Pregnancy, in CULTURAL PERSPECTIVES ON BIOLOGICAL KNOWLEDGE 145 (T. Duster & K. Garrett eds. 1984); A. Lippman, supra note 40; see also B. ROTHMAN, T H E TENTATIVE PREGNANCY: PRENATAL DIAGNOSIS AND THE FUTURE OF MOTHERHOOD (1986).

126 See generally K. MICHAELSON, Childbirth in America: A Brief History and Contemporary Issues, in CHILDBIRTH IN AMERICA, supra note 19, at 1; A. OAKLEY, supra note 24; Fraser, Selected Perinatal Procedures: Scientific Bases for Use and Psycho-social Effects. A Literature Review, 117 ACTA OBSTETRICA ET GYNECOLOGICA SCANDANAVIA 6, 6 (Supp. 1983); O'Reilly, Small “p“Politics: The Midwifery Example, in THE FUTURE OF HUMAN REPRODUCTION, supra note 53, at 159.

127 Board of Trustees, American Med. Ass'n, Legal Interventions During Pregnancy. Court-Ordered Medical Treatments and Legal Penalties for Potentially Harmful Behavior by Pregnant Women, 264 J. A.M.A. 2663 (1990)Google Scholar; Landwirth, , Fetal Abuse and Neglect: An Emerging Controversy, 79 PEDIATRICS 508 (1987)Google Scholar (discussing tension between fetal interests and maternal rights to privacy and self-determination).

128 Petchesky, Fetal Images: The Power of Visual Culture in the Politics of Abortion, in REPRODUCTIVE TECHNOLOGIES: GENDER, MOTHERHOOD AND MEDICINE 57 (M. Stanworth, ed. 1987).

129 Morgan, supra note 109, at 65. For recent use of this term in the context of scientific studies, see supra note 65 and accompanying text.

130 See Robertson, , Procreative Liberty and the Control of Conception, Pregnancy, and Childbirth, 69 VA. L. REV. 405, 438-43 (1983)Google Scholar; Shaw, The Potential Plaintiff: Preconceptional and Prenatal Torts, in 2 GENETICS AND THE LAW 225 (A. Milunsky & G. Annas eds. 1980).

131 E.g., Lazarus, Poor Women, Poor Outcomes: Social Class and Reproductive Health, in CHILDBIRTH IN AMERICA, supra note 19, at 39; Silins, , Semenciw, , Morrison, , Lindsay, , Sherman, , Mao, & Wigle, , Risk Factors for Perinatal Mortality in Canada, 133 CANADIAN MED. ASS'N J. 1214 (1985)Google Scholar (listing social class as risk factor in stillbirths and infant deaths up to seven years of age); Yankauer, , Editorial: What Infant Mortality Tells Us, 80 AM. J . PUB. HEALTH 653 (1990)Google Scholar.

132 See supra text accompanying notes 104-07.

133 Beeson, supra note 125, at 145; Roghmann, , Doherty, , Robinson, , Nitzkin, & Sell, , The Selective Utilization of Prenatal Genetic Diagnosis: Experiences of a Regional Program in Upstate New York During the 1970s, 21 MED. CARE 1111, 1122 (1983)Google Scholar (concluding that in use of prenatal genetic testing, “[t]he primary factor appears to be emotional acceptance by the patient [but] [l]ack of knowledge, financial barriers, earlier prenatal care, and cooperation from the primary care sector are important“); Sokal, , Byrd, , Chen, , Goldberg, & Oakley, , Prenatal Chromosomal Diagnosis: Racial and Geographic Variation for Older Women in Georgia, 244 J . A.M.A. 1355 (1980)Google Scholar (study showing that 15% of Georgia women 40 years and older underwent prenatal chromosomal diagnosis; use ranged from 60% among whites in two large urban counties to 0.5% among blacks outside Augusta and Atlanta health districts).

134 Lippman-Hand, & Piper, , Prenatal Diagnosis for the Detection of Down Syndrome: Why Are So Few Eligible Women Tested?, 1 PRENATAL DIACNOSIS 249, 250 (1981)Google Scholar.

135 Professional underreferral seems to be a factor in underutilization of prenatal diagnosis. Id. at 255.

136 I do not suggest that all women should have an ultrasound exam early in a “normal” pregnancy but merely point out what one of the effects of such a policy might be.

137 Bowman, , Legal and Ethical Issues in Newborn Screening, 83 PEDIATRICS 894, 895Google Scholar (Supp. 1989) (“If we ask poor mothers to participate in newborn screening programs and do not fight for universal prenatal care, equitable health care delivery, education, and adequate housing and food, then we are coconspirators in health deception.“); Lippman, Messing & Mayer, supra note 15, at 398; Lippman, supra note 15; Lippman, supra note 67.

138 Acheson, , Public Health — Edwin Chadwick and the World We Live In, 336 LANCET 1482, 1483 (1990)Google Scholar (United Kingdom study suggesting that inequalities in health are present everywhere).

139 Cf. Stewart, , Access to Health Care for Economically Disadvantaged Canadians: A Model, 81 CANADIAN J. PUB. HEALTH 450, 452-53 (1990)Google Scholar (advocating education as one of four strategies to increase health care access for the poor). Omitted from discussion here, since it is being treated in detail elsewhere, is the marketing of susceptibility screening as a form of preventive medicine and its failure to acknowledge the historical, political and economic determinants of health (by its focus on individuals) or the constraints on behavioral choice created by class (and other) stratifications. Lippman, supra note 67.

140 See Andrews, & Jaeger, , Confidentiality of Genetic Information in the Workplace, 17 AM. J.L. & MED. 75 (1991)Google Scholar.

141 Dunstan, , Screening for Fetal and Genetic Abnormality: Social and Ethical Issues, 25 J. MED. GENETICS 290 (1988)Google Scholar.

142 Dunstan thus sees genetic screening and “selective abortion” as a “rationalized adjunct to natural processes” in which “defective products” (babies) are “discard[ed] spontaneously.” Id. at 292.

143 For a full development of these ideas, see Asch, Reproductive Technology and Disability, in REPRODUCTIVE LAWS FOR THE 1990S, supra note 54, at 69; Asch & Fine, Shared Dreams: A Left Perspective on Disability Rights and Reproductive Rights, in WOMEN WITH DISABILITIES 297 (M. Fine & A. Asch eds. 1988).

144 There would seem to be similar assumptions beneath the transformation of problems with dirty workplaces into problems with women workers who may become pregnant. See, e.g., Bertin, Women's Health and Women's Rights: Reproductive Health Hazards in the Workplace, in HEALING TECHNOLOGY, supra note 61, at 289, 297 (advocating legislation requiring safe workplaces and prohibiting sterility requirements); Woolhandler & Himmelstein, supra note 9, at 1205.

145 Levin, , International Perspectives on Treatment Choice in Neonatal Intensive Care Units, 30 Soc. Sci. & MED. 901, 903 (1990)Google Scholar (citation omitted).

146 For a further discussion on this, see McDonough, supra note 35, at 149.

147 Powell-Griner, & Woolbright, , Trends in Infant Deaths from Congenital Anomalies: Results from England and Wales, Scotland, Sweden and the United States, 19 INT'L J. EPIDEMIOLOGY 391, 397 (1990)Google Scholar (probable that level of infant mortality will be influenced by prenatal screening and selective abortion); Saari-Kemppainen, , Karjalainen, , Ylostalo, & Heinonen, , Ultrasound Screening and Perinatal Mortality: Controlled Trial of Systematic One-Stage Screening in Pregnancy, 336 LANCET 387, 391 (1990)Google Scholar (Researchers of ultrasound screening in Helsinki, Finland concluded that “[t]he decrease in perinatal mortality of about half in this trial can be explained mainly by the detection of major fetal anomalies by ultrasound screening and the subsequent termination of these pregnancies.“).

148 Lippman, supra note 15. See A. FINGER, supra note 61; P. Kaufert, The Production of Medical Knowledge: Genes, Embryos and Public Policy (paper presented at Gender, Science and Medicine II conference, Toronto, Ontario, Nov. 2, 1990). Moreover, illness and disability are hard (i.e., difficult) issues partly because society defines them as such, in its decisions about how (not) to allocate resources to deal with them. Unfortunately, since resources are always “scarce,” the programs or projects that do (not) get supported will merely be those which policymakers choose (not) to fund. No specific choice is inherent in the limited budgets available, although the requirement that choices be made is. In choosing how to deal with health problems, budget limitations may sometimes be secondary to limitations in our visions about what to do. And, in choosing how to approach (even) “hard” issues, genetic prevention is but one possibility.

149 Asch, Reproductive Technology and Disability, supra note 143, at 70.

150 Cf. L. WINNER, supra note 68.

151 See Friedmann, , Opinion: The Human Genome Project — Some Implications of Extensive “Reverse Genetic” Medicine, 46 AM. J. HUM. GENETICS 407, 412 (1990)Google Scholar.

152 Id. at 411.

153 Lippman, Messing & Mayer, supra note 15, at 397.

154 McDonough, supra note 35, at 149.

155 See, e.g., Cunningham, & Kizer, , Maternal Serum Alpha-Fetoprotein Screening: Activities of State Health Agencies: A Survey, 47 AM. J. HUM. GENETICS 899 (1990)Google Scholar (arguing that state health agencies must accept that genetic services constitute a public health responsibility).

156 Lippman, supra note 15. Cf. Shannon, , Public Health's Promise for the Future: 1989 Presidential Address, 80 AM. J. PUB. HEALTH 909 (1990)Google Scholar (need for public health programs to promote social justice).

157 Ryan, The Argument for Unlimited Procreative Liberty: A Feminist Critique, HASTINGS CENTER REP., July-Aug. 1990, at 6 (cautioning that human relationships must not be overlooked in the argument for an unlimited right to procreate).

158 See R. CHADWICK, Having Children, in ETHICS, REPRODUCTION AND GENETIC CONTROL 3 (R. Chadwick ed. 1987) (prenatal diagnosis is not only a private matter); see also Edwards, The Importance of Genetic Disease and the Need for Prevention, 319 PHIL. TRANSACTIONS ROYAL SOC'Y LONDON 211 (1988). Edwards identifies the “conveyance of our genetic material from one generation to the next with the minimum of damage” as the “biggest public health problem facing our species.” Id. at 112. I adapt his comments as a further reminder of the essential interconnections between genes and culture: mutations cause genetic damage and we do make social and political choices that influence the rate of mutation.

159 I thank Margrit Eichler for suggesting this term and apologize if my use distorts her concept inappropriately.

160 Cf. Danis & Churchill, Autonomy and the Commonweal, HASTINGS CENTER REP., Jan.-Feb. 1991, at 25 (suggesting we can no longer avoid the conflict between individual wishes and societal needs and proposing, though with respect to other technologies, that we consider the concept of “citizenship” in attempting to accommodate both levels); see also Fox, The Organization, Outlook and Evolution of American Bioethics: A Sociological Perspective, in SOCIAL SCIENCE PERSPECTIVES ON MEDICAL ETHICS 201 (G. Weisz ed. 1990) [hereinafter SOCIAL SCIENCE PERSPECTIVES].

161 Given that even viewing private and public as alternatives reflects our prior western beliefs that these are necessarily distinct spheres, it is of interest that the notion of disjuncture seems to echo the lingering historical debate between “healers” and “hygienists” about the best way to deal with health problems. Generally, heroism in healing has had more appeal than the supposedly less glamorous work of the hygienist. See Loomis, & Wing, , Is Molecular Epidemiology a Germ Theory for the End of the Twentieth Century?, 19 INT'L J. EPIDEMIOLOGY 1 (1990)Google Scholar.

162 Important to understanding this idea is the distinction between “fetalists” and “feminists.” Raymond, Fetalists and Feminists: They are Not the Same, in MADE T O ORDER: THE MYTH OF REPRODUCTIVE AND GENETIC PROGRESS 58 (P. Spallone & D. Steinberg eds. 1987). “Feminist positions on the NRTs [new reproductive technologies] highlight the explicit subordination and manipulation of women and their bodies that are involved in these reproductive procedures … . [while fjetalists are concerned with what they express as the ‘violence’ done to the conceptus, embryo, or fetus in procedures such as IVF.” Id. at 60-61.

163 In fact, we must be careful not to assume that all the social implications are ethical ones and to acknowledge that even deciding what the moral/ethical questions are is not “value free.” This is especially important because bioethical analyses tend to emphasize individual rights rather than the “mutual obligations and interdependence” that may be critical determinants. G. WEISZ, Introduction, in SOCIAL SCIENCE PERSPECTIVES, supra note 160, at 1, 3.

164 Fletcher, , Where in the World Are We Going with the New Genetics?, 5 J. CONTEMP. HEALTH L. POL'Y 33 (1989)Google Scholar.

† this paper represents a synthesis of much of what they and I have said or written on various occasions in our interconnecting and overlapping commentaries. I have tried to disentangle who said/wrote what first so as to give credit where it is due, but I fear I have not always been successful. This means that the initiator of some argument or the’ coiner of some phrase may not be appropriately acknowledged in what follows. I request forgiveness for these citational lapses and count on those whose work I have unconsciously adopted and adapted without credit to point them out.

I extend special gratitude, too, to Louise Bouchard, Myriam Marrache and Marc Renaud, colleagues at the Université du Montréal who helped me think through some aspects of this project during its earliest stages in its — and their — mother tongue.

I have benefitted in many ways from my friends Gwynne Basen, Margrit Eichler, Patricia Kaufert, Karen Messing and Louise Vandelac. Their insightful ideas and comments have given depth and breadth to my own thinking about the issues discussed here, and their constant support has kept me going. Friendship with these very special women has enriched my life enormously.

The same is true of Ruth Hubbard, who graciously and thoughtfully shared her wisdom and provided encouragement. She was first to introduce many of the issues and concerns I address and her presence is apparent throughout this text. Her proposal that I use the opportunity of this paper to pull together several partial manuscripts I had been carrying around, on paper and in my head, was, moreover, just the stimulus needed to get me going at a time when this project was stalled and likely to remain so forever. But, while she is responsible for the process, any shortcomings in the product are mine alone.

There are others whom I would also like to thank: Marion Kaplan, the “best friend” everyone should have who, with Irwin, was an extravagent donor of bed and board during my sojourn in New York; the staff at the Hastings Center for their hospitality and the occasion to get carried away in their library during my month there as a visiting international scholar in 1989; Ryk Edelstein and Bill Swetland, who made emergency house calls when my limited word processing skills made manuscript drafts mysteriously disappear; Zeba Hashmi who put up with multiple document conversions trying to harmonize her WP 5.0 with my 4.2 as we created the text and its multiple annotations; the Social Sciences and Humanities Research Council of Canada for providing funds to support research assistants for project-related studies that allowed me to meet and work with Fern Brunger, a graduate student who held my hand during my first steps in the world of critical medical anthropology, and provided clear evidence of how the best learning is a two-way street; the National Health Research Development Program of Health and Welfare Canada for a Scholar Award that provides my personal support; and finally, but perhaps most of all and with much love, Christopher and Jessica for being in my life.