Article contents
Prisoners as Living Donors: A Vulnerabilities Analysis
Published online by Cambridge University Press: 07 December 2017
Abstract:
Although national guidelines exist for evaluating the eligibility of potential living donors and for procuring their informed consent, no special protections or considerations exist for potential living donors who are incarcerated. Human research subject protections in the United States are codified in the Federal Regulations, 45 CFR 46, and special protections are given to prisoners. Living donor transplantation has parallels with human subject research in that both activities are performed with the primary goal of benefiting third parties. In this article, we describe what special considerations should be provided to prisoners as potential living donors using a vulnerabilities approach adapted from the human research subject protection literature.
- Type
- Special Section: Open Forum
- Information
- Copyright
- Copyright © Cambridge University Press 2017
References
Notes
1. Starzl, TE, Marchioro, TL, Brittain, RS, Holmes, JH, Waddell, WR. Problems in renal homotransplantation. JAMA 1964;187(10):734–40.Google Scholar
2. See note 1, Starzl et al. 1964, at 734.
3. Marchioro, TL, Brittain, RS, Hermann, G, Jolmes, J, Waddell, WR, Starzl, TE. Use of living donors for renal homotransplantation. Archives of Surgery 1964;88(4):711–20.Google Scholar
4. Wolstenholme GEW, M. O’Connor, M, eds. Ethics in Medical Progress: With Special Reference to Transplantation. Boston: Little, Brown and Company; 1966, at vii–viii.Google Scholar
5. See note 4, Wolstenhome, O’Connor 1966, at 75.
6. See note 4, Wolstenhome, O’Connor 1966, at 76–77.
7. See for example, Krotoski, WA. Hepatitis in prisoner blood donors. New England Journal of Medicine 1972;286(3):149;Google Scholar Hammett, TM, Harmon, MP, Rhodes, W. The burden of infectious disease among inmates of releases from US correctional facilities, 1997. American Journal of Public Health 2002;92(11):1789–94.CrossRefGoogle ScholarPubMed
8. Indiana University Center for Bioethics. Death Row Organ Donation; available at http://bioethics.medicine.iu.edu/service-and-consultation/archived-pages/topic-guides/deathrow/#cases (last accessed 23 Aug 2017); Miller, J. A Life for an afterlife: Assessing the potential redemption of capital inmates’ requests to posthumously donate organs under the Religious Land Use and Institutionalized Persons Act. Rutgers Journal of Law and Religion 2011;13(part 1):87–137.Google Scholar
9. Williams T. Jailed sisters are released for kidney transplant. The New York Times, January 7, 2011; available at http://www.nytimes.com/2011/01/08/us/08sisters.html?mcubz=3 (last accessed 23 Aug 2017).
10. See US Department of Justice (DOJ), Federal Bureau of Prisons. Program Statement: Patient Care. 2014, June 3, Section 38: Organ Donation by Inmates: 45; available at: https://www.bop.gov/policy/progstat/6031_004.pdf (last accessed 23 Aug 2017). It is of note that in April 2015, the British Transplantation Society published guidelines that allow prisoners to serve as a living kidney or living liver donors to either a family member or a stranger after an intensive case review, although it does acknowledge that practical and logistical issues may be too overwhelming. See British Transplant Society. UK Guidelines for Living Organ Donation from Prisoners. April 2015; available at https://bts.org.uk/wp-content/uploads/2016/09/04_BTS_Donation_Prisoners-1.pdf. (last accessed 23 Aug 2017).
11. Kidney paired exchange was described by Ross and colleagues in 1997: Ross LF, Rubin DT, Siegler M, Josephson MA, Thistlethwaite JR, Jr, Woodle ES. Ethics of a paired-kidney-exchange program. New England Journal of Medicine 1997;336:1752–5. Even if current policy were interpreted to permit prisoners to participate in paired exchanges or if the current policy were revised to specifically permit prisoners to participate in paired exchanges, the participation of prisoners in kidney exchanges (or kidney chains) would not be guaranteed. All transplant programs must abide by the policies enumerated by the Organ Procurement and Transplantation Network (OPTN) to be offered organs for transplantation. The OPTN policies require disclosure to transplant candidates if the donor, whether living or deceased, is at increased risk for HIV or hepatitis as “set forth in the current U.S. Public Health Services (PHS) Guideline.” See OPTN Policies, August 10, 2017 available at hrsa.gov/contentdocuments/optn_policies.pdf. (last accessed 23 August 2017). The PHS guidelines classifies “People who have been in lockup, jail, prison, or a juvenile correctional facility for more than 72 consecutive hours in the preceding 12 months” as being at increased risk. (See Seem DL, Lee I, Umscheid CA, Kuehnert, MJ. PHS Guideline for reducing human immunodeficiency virus, hepatitis B virus, and hepatitis C virus transmission through organ transplantation. Public Health Reports 2013;128:247–343, at 251). Using prisoners as potential donors raises a wide array of questions that need to be explored including whether other incompatible pairs have the right to know that the exchange donor is a prisoner. United States policies state that the recipient must be told that the donor is at increased risk but not why the donor met that criterion. The recent British Transplant Society guidelines more explicitly state: “there is no entitlement for the recipient to be informed that the donor is a prisoner and/or the reason for imprisonment.” (see note 10, British Transplant Society 2015, at 7). Whether transplant teams will be comfortable with this nondisclosure of incarceration history/status has not been explored empirically. In addition, it is not known whether transplant programs would agree to list prisoners for exchanges or whether other incompatible living donor–recipient pairs would agree to accept a living organ from a donor classified as “at increased risk” for HIV or hepatitis for unspecified reasons.
12. Jones, J. Bad Blood: The Tuskegee Syphilis Experiment. New York: Free Press; 1981.Google Scholar
13. National Research Act (PL 93-348) July 12, 1974.
14. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Washington DC: Government Printing Office, April 18, 1978; available at https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/index.html. (last accessed 23 Aug 2017).
15. Department of Health and Human Services. Code of Federal Regulations Title 45 Public Welfare Part 46 (hereinafter referred to as 45 CFR 46). Final Regulations Amending Basic Health and Human Services Policy for the Protection of Human Research Subjects Federal Register 46 (January 26, 1981), 8366–91, last revised January 15, 2009; available at https://www.hhs.gov/ohrp/regulations-and-policy/regulations/45-cfr-46/index.html (last accessed 23 Aug 2017).
16. National Commission for the Protection of Biomedical and Behavioral Research. Report and Recommendations: Research Involving Prisoners. Washington DC: Department of Health, Education, and Welfare Publication No. (OS) 76-131; 1976, at 1.
17. See, for example, Kondo, KK, Johnson, ME, Ironside, EF, Brems, C, Eldridge, GD. HIV/AIDS research in correctional settings: Perspectives on training needs from researchers and IRB members. AIDS Education & Prevention 2014;26(6):565–76;CrossRefGoogle ScholarPubMed Hatfield, F. Prison research: The view from inside. Hastings Center Report 1977;7(1):11–2.Google Scholar
18. See note 16, National Commission 1976:7–8.
19. See note 15, 45 CFR 46 2009, at §46.305 (a) (2) and (a) (6).
20. See note 15, 45 CFR 46 2009, at §46.304 (b).
21. Kipnis, K. Vulnerability in research subjects: A bioethical taxonomy. In: The National Bioethics Advisory Commission (NBAC). Ethical and Policy Issues in Research Involving Human Participants Volume II Commissioned Papers and Staff Analysis. Bethesda, MD: National Bioethics Advisory Commission, August 2001:G1–13, at G3.Google Scholar
22. See note 21, Kipnis 2001, at G3.
23. Kipnis, K. Seven vulnerabilities in the pediatric research subject. Theoretical Medicine and Bioethics. 2003;24(2):107–20.Google Scholar
24. See note 23, Kipnis 2003, at 108.
25. Sadler, HH, Davison, L, Carroll, C, and Kountz, SL. The living, genetically unrelated, kidney donor. Seminars in Psychiatry 1971;3(1):86–101;Google Scholar Simmons, RG, Klein, SD, Simmons, RL. Gift of Life: The Social and Psychological Impact of Organ Transplantation. New York: John Wiley and Sons; 1977.Google Scholar
26. Spital A. Unconventional living kidney donors––attitudes and use among transplant centers. Transplantation 1989;48(2):243–8; Spital A. Unrelated living kidney donors: An update of attitudes and use among US transplant centers. Transplantation 1994;57(12):1722–6; Spital, A. Evolution of attitudes at US Transplant centers toward kidney donation by friends and altruistic strangers. Transplantation 2000;69(8):1728–31.CrossRefGoogle ScholarPubMed
27. Matas, AJ, Garvey, CA, Jacobs, CL, and Kahn, JP. Nondirected Donation of Kidneys from Living Donors. New England Journal of Medicine 2000;343(6):433–36.CrossRefGoogle ScholarPubMed
28. For US policy prohibiting prisoners from donating to strangers, see note 10, DOJ Federal Bureau of Prisons 2014. For examples of prisoners serving as living donors to family members, see note 8, Indiana University Center for Bioethics, and Miller 2011.
29. Hinkle, W. Giving until it hurts: Prisoners are not the answer to the national organ shortage. Indiana Law Review 2002;35(2):593–619, at 609.Google Scholar
30. Visconti, JL. Exchanging a kidney for freedom: The illegality of conditioning prison releases on organ donations. Criminal and Civil Confinement 2012;38(1):199–217, at 211.Google Scholar
31. National Organ Transplantation Act NOTA (P.L. 98-507). Approved October 19, 1984 at 42 US Code § 274e.
32. Lee EC. Trading kidneys for prison time: When two contradictory legal traditions intersect, which one has the right of way. University of San Francisco Law Review 2009;43(3):507–56, at 549.
33. Magee NY. Gladys and Jamie Scott: Convicted Sisters Continue Fight for Freedom. Lee Bailey’s Eurweb (Electronic Urban Report). July 19, 2016. On the web at http://www.eurweb.com/2016/07/gladys-jamie-scott-sibling-felons-continue-fight-freedom-eur-exclusive/ (last accessed 23 Aug 2017).
34. Jefferson-Jones, J. The exchange of inmate organs for liberty: Diminishing the “yuck factor” in the bioethics repugnance debate. The Journal of Gender Race and Justice 2013;16(105):105– 37, at 115.Google Scholar
35. See note 34, Jefferson-Jones 2013, at 115.
36. See, for example, Lee v Quarterman, No C-07-476, 2008 WL 3926118 at *2 (S.D. Texas, August 21, 2008); Campbell v. Wainwright 416 F.2d 949, 950 (5th Cir. 1969).
37. Goldberg, AM, Frader, J. Prisoners as living organ donors: The case of the Scott sisters. American Journal of Bioethics 2011;11(10):15–6.CrossRefGoogle ScholarPubMed
38. See note 4, Wolstenhome, O’Connor 1966, at 14–15, 66.
39. Abecassis M, Adams M, Adams P, Arnold RM, Atkins CR, Barr ML, et al. for the Live Organ Donor Consensus Group. Consensus statement on the live organ donor. JAMA 2000;284(22):2919–26, at 2920.
40. See note 39, Abecassis et al. 2000, at 2921.
41. Department of Health and Human Services Advisory Committee on Organ Transplantation. Meeting Archives: Full Consensus Recommendations, Recommendations 1–18, November 2002; available at http://organdonor.gov/legislation/acotrecs118.html (last accessed 23 Aug 2017).
42. Department of Health and Human Services Part II. Centers for Medicare and Medicaid Services 42 DFR Parts 405, 482, 488, and 498. Medicare Program. Hospital conditions of participation: Requirements for approval and re-approval of transplant centers to perform organ transplants; final rule. Federal Register, 2007;72(61):15198–280.
43. Hays RE, LaPointe Rudow D, Dew MA, Taler SJ, Spicer H, Mandelbrot DA. The independent living donor advocate: A guidance document from the American Society of Transplantation’s Living Donor Community of Practice (AST LDCOP). American Journal of Transplantation 2015;15(2):518–25.
44. Rudow, DL, Brown, RS Jr. Role of the independent donor advocacy team in ethical decision making. Progress in Transplantation 2005;15(3):298–30;Google Scholar Rudow, DL. The living donor advocate: A team approach to educate, evaluate, and manage donors across the continuum. Progress in Transplantation 2009;19(1):64–70.Google Scholar
45. Millis MA, Simmerling M. Prisoners as organ donors: Is it worth the effort? Is it ethical? Transplantation Proceedings 2009;41(1):23–4.
46. Appelbaum PS, Grisso T. Assessing patients’ capacities to consent to treatment. New England Journal of Medicine 1988;319(25):1635–8.
47. See note 46, Appelbaum, Grisso 1988.
48. Harlow CW. Bureau of Justice Statistics Special Report: Education and Correctional Populations. Revised April 15, 2003; available at http://www.bjs.gov/content/pub/pdf/ecp.pdf (last accessed 23 Aug 2017).
49. Cunningham MD, Vigen MP. Death row inmate characteristics, adjustment, and confinement: A critical review of the literature. Behavioral Sciences and the Law 2002;20(1–2):191–210, at 191–2.
50. Dew MA, Jacobs CL, Jowsey SG, Hanto R, Miller C, Delmonico FL for the United Network for Organ Sharing (UNOS), American Society of Transplant Surgeons, and American Society of Transplantation. Guidelines for the psychosocial evaluation of living unrelated kidney donors in the United States. American Journal of Transplantation 2007;7(5):1047–54.
51. Fazel S, Danesh J. Serious mental disorder in 23,000 prisoners: A systematic review of 62 surveys. Lancet 2002;359:545–50.
52. See note 51, Fazel, Danesh, 2002, at 548, citing general population data from the United States and the United Kingdom.
53. Fazel S, Bairns P, Doll H. Substance abuse and dependence in prisoners: A systematic review. Addiction 2006;101:181–91.
54. See note 21, Kipnis 2001, at G8.
55. Patton L-HM. Note: A call for common sense: Organ donation and the executed prisoner. Virginia Journal of Social Policy and the Law, 1996;3:387–434, at 417–8 citing Fry S. Note: Experimentation on prisoners’ remains. American Criminal Law Review 1986;24:165.
56. See note 21, Kipnis 2001, at G7–G8.
57. See for example La Vigne NH, Naser RL, Brooks LE, Castro JL. Examining the effect of incarceration and in-prison family contact on prisoners’ family relationships. Journal of Contemporary Criminal Justice 2005;21(4):314–35; Hairston CF. Family ties during imprisonment: Important to whom and for what? The Journal of Sociology and Social Welfare 2015;18(1):87–104; Minnesota Department of Corrections. The Effects of Prison Visitation on Offender Recidivism. November 2011; available at https://mn.gov/doc/assets/11-11PrisonVisitationResearchinBrief-Final_tcm1089-272782.pdf (last accessed 23 Aug 2017).
58. Travis J, McBride EC, Solomon AL. Families left behind: The hidden costs of incarceration and reentry. October 2003, revised June 2005; available at http://www.urban.org/sites/default/files/alfresco/publication-pdfs/310882-Families-Left-Behind.PDF (last accessed 23 Aug 2017).
59. See note 10, British Transplant Society 2015.
60. See note 10, DOJ Federal Bureau of Prisons 2014.
61. See note 23, Kipnis 2003, at 114.
62. See, for example, Hatfield F. Prison research: The view from inside. Hastings Center Report 1977;7(1):11–2; Mitford J. Kind and Usual Punishment: The Prison Business. New York: Alfred A Knopf; 1973.
63. Tong A, Chapman JR, Wong G, Kanellis J, McCarthy G, Craig JC. The motivations and experiences of living kidney donors: A thematic synthesis. American Journal of Kidney Diseases 2012;60(1):15–26; Clemens KK, Thiessen–Philbrook H, Parikh CR, Yang RC, Karley ML, Boudville N, et al. for the Donor Nephrectomy Outcomes Research (DONOR). Psychosocial health of living kidney donors: A systematic review. American Journal of Transplantation 2006;6(12):2965–77.
64. See, for example, Wilper AP, Woolhandler S, Boyd JW, Lasser KE, McCormick D, Bor DH, et al. The health and health care of US prisoners: Results of a nationwide survey. American Journal of Public Health 2009;99(4):666–72; Benbow S, Hall J, Heard K, Donelle L. Conducting research with criminalized women in an incarcerated setting: The researcher’s perspective. Canadian Journal of Nursing Research 2013;45(3):80–91.
65. Mjøen G, Hallan S, Hartmann A, Foss A, Midtvedt K. Long-term risks for kidney donors. Kidney International 2014;86:162–7; Muzaale AD, Massie AB, Wang MC, Montgomery RA, McBride MA, Wainright JL, et al. Risk of end-stage renal disease following live kidney donation. JAMA 2014; 311(6):579–86.
66. See note 10, DOJ Federal Bureau of Prisons 2014.
67. See note 11, Seem et al. 2013.
68. See note 11, OPTN policies 2016.
69. See note 11, Seem et al. 2013.
70. See note 45, Millis, Simmerling 2009. See also Satel S. A kidney for a kidney. Slate, April 15, 2013; available at http://www.slate.com/articles/health_and_science/medical_examiner/2013/04/let_prisoners_donate_organs_it_could_be_fair_ethical_and_just.html (last accessed 23 Aug 2017).
71. Kaba F, Lewis A, Glowa-Kollisch S, Hadler J, Lee D, Alper H, et al. Solitary confinement and risk of self-harm among jail inmates. American Journal of Public Health 2014;104(3):442–7; Anonymous. The Istanbul Statement on the Use and Effects of Solitary Confinement. Adopted December 9, 2007; available at http://solitaryconfinement.org/uploads/Istanbul_expert_statement_on_sc.pdf (last accessed 23 Aug 2017).
72. See, for example, Grady C. Money for research participation: Does it jeopardize informed consent? American Journal of Bioethics 2001;1(2):40–4; Grant RW, Sugarman J. Ethics in human subjects research: do incentives matter? Journal of Medicine and Philosophy 2004;29(6):717–38.
73. See note 10, DOJ Federal Bureau of Prisons 2014.
74. See note 37, Goldberg, Frader 2011.
- 9
- Cited by