Hostname: page-component-76fb5796d-25wd4 Total loading time: 0 Render date: 2024-04-26T17:51:52.864Z Has data issue: false hasContentIssue false
  • English
  • Français

Transparent Vessels?: What Organ Donors Should Be Allowed to Know about Their Recipients

Published online by Cambridge University Press:  01 January 2021

Richard H. Dees
Get access Rights & Permissions [Opens in a new window]

Extract

After a long search, Jonathan has finally found someone willing to donate a kidney to him and thereby free him from dialysis. Meredith is Jonathan's second cousin, and she considers herself a generous person, so although she barely knows Jonathan, she is willing to help. However, as Meredith learns more about the donation process, she begins to ask questions about Jonathan: “Is he HIV positive? I heard he got it using drugs. Has he been in jail? He's already had one live donor, so what happened to the first kidney? Did he forget to take his drugs or something?” The transplant center must, then, decide if Meredith is, in fact, entitled to answers to these kinds of questions. According to the Consensus Statement on the Live Organ Donor, “It is incumbent on the transplant center to provide full and accurate disclosure to potential donors of all pertinent information regarding risk and benefit to the donor and recipient.” But whether answers to the Meredith's questions count as “pertinent information regarding the risk and benefit” is the issue at hand.

Type
Independent
Information
Journal of Law, Medicine & Ethics , Volume 41 , Issue 1 , Spring 2013 , pp. 323 - 332
Copyright
Copyright © American Society of Law, Medicine and Ethics 2013

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

In my example, the donor is female and the recipient is male, and for clarity, I will refer to the generic donor as female and the generic recipient as male. While the points of the paper obviously apply to donors and recipients of either gender, my choice is not random: about 60 percent of live donors are female, and about 60 percent of recipients of live donations are male. See Organ Procurement and Transplant Network (OPTN), OPTN/SRTR Annual Report 2010, at Tables 2.9, 5.4d available at <http://srtr.transplant.hrsa.gov/> (last visited February 22, 2013).+(last+visited+February+22,+2013).>Google Scholar
Live Organ Donors Consensus Group, “Consensus Statement on the Live Organ Donor,” JAMA 284, no. 22 (2000): 2919–2926, at 2920.CrossRefGoogle Scholar
Segev, D. L. Muzaale, A. D. Abimereki, D. Caffo, B. S. Mehta, S. H. Singer, A. L. Taranto, A. S. E. McBride, M. A., and Montgomery, R. A., “Perioperative Mortality and Long-term Survival Following Live Kidney Donation,” JAMA 303, no.10 (2010): 959–966, at 965.CrossRefGoogle Scholar
Ibrahim, H. N. Foley, R. Tan, L. P. Rogers, T. Bailey, R. F. Guo, H. Gross, C. R., and Matas, A. J., “Long Term Consequences of Kidney Donation,” New England Journal of Medicine 360, no. 5 (2009): 459–469; and Morgan, B. R. and Ibrahim, H. N., “Long-Term Outcomes of Kidney Donations,” Current Opinion in Nephrology and Hypertension 20, no. 6 (2011): 605–609; Lentine, K. L. and Patel, A., “Risks and Outcomes of Living Donations,” Advances in Chronic Kidney Disease 19, no. 4 (2012): 220–228.Google Scholar
For simplicity's sake, I will limit the discussion to kidney donations. Most of the discussion will apply to other live donations as well. However, the risks involved in other donations are often higher. So, for example, the risk of death for liver donors is 17 per 10,000. See Muzaale, A. D. Dagher, N. N. Montgomery, R. A. Taranto, S. E. McBride, M. A., and Segev, D. L., “Estimates of Early Death, Acute Liver Failure, and Long-term Mortality among Live Liver Donors,” Gastroenterology 142, no. 2 (2012): 273–280.CrossRefGoogle Scholar
See Live Organ Group, supra note 2.Google Scholar
Ad Hoc Clinical Practice Guidelines Subcommittee of the Patient Care and Education Committee of the American Society of Transplant Physicians, “The Evaluation of Living Renal Transplant Donors: Clinical Practice Guidelines,” Journal of the American Society of Nephrology 7, no. 11 (1996): 2288–2313, at 2305–2306 and 2302–2303. See also Organ Procurement and Transplant Network, “Proposal to Establish Requirements for the Medical Evaluation of Living Kidney Donors,” available at <http://optn.transplant.hrsa.gov/PublicComment/pubcommentPropSub_295.pdf> (last visited February 23, 2013).+(last+visited+February+23,+2013).>Google Scholar
Dew, M. A. Jacobs, C. L. Jowsey, S. G. Hanto, R. Miller, C., and Delmonico, F. L., “Guidelines for the Psychosocial Evaluation of Living Unrelated Kidney Donors in the United States,” American Journal of Transplantation 7, no. 5 (2007): 1047–1054; Lentine, K. L. Schnitzler, M. A. Xiao, H. Axelrod, D. Davis, C. L. McCabe, M. Brennan, D. C. Leander, S. Garg, A. X., and Waterman, A. D., “Depression Diagnoses after Living Kidney Donation: Linking U.S. Registry Data and Administrative Claims,” Transplantation 94, no. 1 (2012): 77–83.Google Scholar
Ross, L. F. Glannon, W. Josephson, M. A., and Thistlethwaite, J. R. Jr., “Should All Living Donors Be Treated Equally?” Transplantation 74, no. 3 (2002): 418–426.CrossRefGoogle Scholar
See OPTN, supra note 1, at Tables 5.8cd, 5.10cd.Google Scholar
See Live Organ Donors, supra note 2; Steinman, T. Becker, B. Frost, A. Olthoff, K. Smart, F. Suki, W., and Wilkinson, A., “Guidelines for the Referral and Management of Patients Eligible for Solid Organ Transplantation,” Transplantation 71, no. 9 (2001): 1189–1204.Google Scholar
See Steinman, , supra note 10 at 1193.Google Scholar
Formica, R. Asch, W. Wagner, K., and Kulkarni, S., “Kidney Transplantation and HIV: Does Recipient Privacy Outweigh the Donor's Right to Information?” Clinical Journal of the American Society of Nephrology 5, no. 5 (2010): 924–928; Bright, P. D. and Nutt, J., “The Ethics Surrounding HIV, Kidney Donation, and Patient Confidentiality,” Journal of Medical Ethics 35, no. 4 (2009): 270–271.CrossRefGoogle Scholar
Dunn, T. B. Browne, B. J. Gillingham, K. J. Kandaswamy, T. Human, A. Payne, W. D. Sutherland, D. E. R., and Matas, A. J., “Selective Retransplant after Graft Loss to Nonadherence: Success with a Second Chance,” American Journal of Transplantation 9, no. 6 (2009): 1337–1346.CrossRefGoogle Scholar
See Ad Hoc Subcommittee, supra note 6, at 2302–2303 and 2298; OPTN, supra note 6.Google Scholar
See Elliott, C., “What's Wrong with Living Heart Transplantation?” in A Philosophical Disease (New York: Routledge, 1999): 103–120, at 105–106.Google Scholar
Magee, J. C. Barr, M. L. Bassadonna, G. P. Johnson, M. R. Mahadevan, S. McBride, M. A. Schaubel, D. E., and Leichtman, A. B., “Repeat Organ Transplantation in the United States, 1996–2005” American Journal of Transplantation 7, no. s1 (2007): 1424–1433; and Rao, P. S. and Ojo, A., “Organ Retransplantation in the United States: Trends and Implications,” Clinical Transplants (2008): 57–67. But see Barocci, S. Valenta, U. Fontan, Tagliamacco, A. Santori, G. Mossa, M. Ferrari, E. Trovatello, G. Centore, C. Lorenzi, S. Rolla, D., and Nocera, A., “Long-Term Outcome on Kidney Retransplantation: A Review of 100 Cases from a Single Center,” Transplantation Proceedings 41, no. 4 (2009): 1156–1158.Google Scholar
See OPTN, supra note 1, at Table 5.10d.Google Scholar
See Live Organ Group, supra note 2, at 2920.Google Scholar
Id., at 2925 (emphasis added).Google Scholar
The percentage of potential recipients who thought donors should have this information is, in every case, higher than those of potential donors. For HIV status, 58 percent of potential donors and 67 percent of potential recipients thought the donor should be told. For loss of organ due to noncompliance, 75 percent of potential donors and 84 percent of potential recipients thought the donor should know. Rodrigue, J. R. Ladin, K. Pavlakis, M., and Mandelbrot, D. A., “Disclosing Recipient Information to Potential Living Donors: Preferences of Donors and Recipients, Before and After Surgery,” American Journal of Transplantation 11, no. 6 (2011): 1270–1278, at 1274.CrossRefGoogle Scholar
An average of about 21 people die each year in skydiving accidents in the U.S., 6.7 deaths for every 10,000 skydivers, while an average of less than two people died each year from kidney donations, 3.1 deaths for every 10,000 donations. See United States Parachute Association, “Skydiving Safety,” available at <http://www.uspa.org/AboutSkydiving/SkydivingSafety/tabid/526/Default.aspx> (last visited February 22, 2013) and Segev, , supra note 3, at 965.+(last+visited+February+22,+2013)+and+Segev,+,+supra+note+3,+at+965.>Google Scholar
Scheper-Hughes, N., “The Tyranny of the Gift: Sacrificial Violence in Living Donor Transplants,” American Journal of Transplantation 7, no. 3 (2007): 507–11.CrossRefGoogle Scholar
See Dew, et al., supra note 7; Levy, N. B., “Psychological Aspects of Renal Transplantation,” Psychosomatics 35, no. 5 (1994): 427–433.Google Scholar
See Elliott, , supra note 15, at 118–1119.Google Scholar
See Magee, et al., supra note 16; Rao, and Ojo, , supra note 16; Barocci, et al., supra note 16.Google Scholar
Stock, P. G. Barin, B. Murphy, B. Hanto, D. Diego, J. M. Light, J. Davis, C. Blumberg, E. Simon, D. Subramanian, A. Millis, J. M. Lyon, G. M. Brayman, K. Slakey, D. Shapiro, R. Melancon, J. Jacobson, J. M. Stosor, V. Olson, J. L. Stablein, D. M., and Roland, M. E., “Outcomes of Kidney Transplantation in HIV-Infected Patients,” New England Journal of Medicine 363, no. 21 (2010): 2004–2014, at 2008; and Locke, J. E. Montgomery, R. A. Warren, D. S. Subramanian, A., and Segev, D. L., “Renal Transplants in HIV-Positive Patients: Long-Term Outcomes and Risk Factors for Graft Loss,” Archives of Surgery 144, no. 1 (2009): 83–86.Google Scholar
See Stock, et al., supra note 26, at 2012; Locke, et al., supra note 26.Google Scholar
See Rodrigue, et al., supra note 20, at 1274.Google Scholar
See Bright, and Nott, , supra note 13, at 271.Google Scholar
The Washington Post/Kaiser Family Foundation, 2012 Survey of Americans on HIV/AIDS, available at <http://www.kff.org/kaiserpolls/upload/8334-T.pdf> (last visited February 22, 2013).+(last+visited+February+22,+2013).>Google Scholar
See Dunn, et al., supra note 13, at 1345. An unfortunate truth is that many cases of non-adherence are related to problems that the recipients have paying for the immunosuppressant drugs and to the difficulties they have in maintaining such a regimen. See Evans, R. W. Applegate, W. H. Briscoe, D. M. Cohen, D. J. Rorick, C. C. Murphy, B. T., and Madse, J. C., “Cost-Related Immunosuppressive Medication Nonadherence among Kidney Transplant Recipients,” Clinical Journal of the American Society of Nephrology 5, no. 12 (2010): 2323–2328); Dobbels, F. Van Damme-Lombaert, R. Vanhaecke, J., and De Geest, S., “Growing Pains: Non-adherence with the Immunosuppressive Regimen in Adolescent Transplant Patients,” Pediatric Transplantation 9, no. 3 (2005): 381–390. Such problems point to another significant disparity between rich and poor in the transplant system. However, the data available are not detailed enough to determine if such patients are more or less likely to lose a second transplant than other non-adherent recipients.Google Scholar
See Dunn, et al., supra note 13, at 1341.CrossRefGoogle Scholar
Id., at 1345.Google Scholar
See Rodrigue, et al., supra note 20, at 1274.Google Scholar