Advertisement

Current Transplantation Reports

, Volume 6, Issue 2, pp 192–198 | Cite as

Emerging Ethical Challenges in Living Kidney Donation

  • Virginie Vallée Guignard
  • Marie-Chantal FortinEmail author
Live Kidney Donation (K Lentine and R Schaffer, Section Editors)
Part of the following topical collections:
  1. Topical Collection on Live Kidney Donation

Abstract

Purpose of Review

Living-donor kidney transplantation (LDKT) offers the best medical outcomes in terms of graft and patient survival for end-stage renal disease (ESRD) patients. LDKT involves a medically and psychologically suitable individual willingly agreeing to donate a kidney to a loved one or stranger. It is a unique situation in which a healthy person consents to having a medical procedure for another person’s benefit. LDKT raises numerous ethical issues, particularly with respect to voluntary consent, risks and benefits, and vulnerability.

Recent Findings

In recent years, the discovery of APOL1, a gene associated with increased risk of chronic kidney disease and ESRD in African Americans, and unique situations arising from requests to undergo living donation from persons who are not traditionally healthy or have social circumstances that may challenge influence-free, informed decision making have challenged the ethics of LDKT.

Summary

In this article, we discuss the ethical issues surrounding three emerging situations in LDKT: living kidney donors with life-limiting illness, incarcerated living kidney donors, and APOL1 genotyping in the context of living donor candidate evaluation.

Keywords

Living kidney donation Bioethics Living donors with life-limiting illness Inmates as living donors APOL1 genetic testing Informed consent 

Notes

Acknowledgments

Dr. Fortin is a research scholar of the Fonds de recherche du Québec–Santé (career award).

Compliance with Ethical Standards

Conflict of Interest

Virginie Vallée Guignard and Marie-Chantal Fortin declare no conflict of interest.

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects performed by any of the authors.

References

Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance

  1. 1.
    Reese PP, Boudville N, Garg AX. Living kidney donation: outcomes, ethics, and uncertainty. Lancet. 2015;385(9981):2003–13.CrossRefGoogle Scholar
  2. 2.
    Terasaki PI, Cecka JM, Gjertson DW, Takemoto S. High survival rates of kidney transplants from spousal and living unrelated donors. N Engl J Med. 1995;333(6):333–6.CrossRefGoogle Scholar
  3. 3.
    Rabaux Y. Étude sur l’économique de l’insuffisance rénale. La Fondation canadienne du rein - Division Québec, 2012 November 12. Report No.Google Scholar
  4. 4.
    Van Pilsum Rasmussen S, Henderson M, Kahn J, Segev D. Considering tangible benefit for interdependent donors: extending a risk-benefit framework in donor selection. Am J Transplant. 2017;17(10):2567–71.CrossRefGoogle Scholar
  5. 5.
    Li T, Dokus M, Kelly K, Ugoeke N, Rogers J, Asham G, et al. Survey of living organ Donors' experience and directions for process improvement. Prog Transplant. 2017;27(3):232–9.CrossRefGoogle Scholar
  6. 6.
    Kisch A, Forsberg A, Fridh I, Almgren M, Lundmark M, Lovén C, et al. The meaning of being a living kidney, liver or stem cell donor - a meta-ethnography. Transplantation. 2018;102(5):744–56.CrossRefGoogle Scholar
  7. 7.
    •• Ross LF, Thistlethwaite JR. Developing an ethics framework for living donor transplantation. J Med Ethics. 2018;44(12):843–50 This is an important article because it develops an ethics framework for living donor transplantation using a vulnerabilities approach. CrossRefGoogle Scholar
  8. 8.
    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.CrossRefGoogle Scholar
  9. 9.
    Freedman BI, Limou S, Ma L, Kopp JB. APOL1-associated nephropathy: a key contributor to racial disparities in CKD. Am J Kidney Dis. 2018;72(5S1):S8–S16.CrossRefGoogle Scholar
  10. 10.
    Mezrich JD, Scalea J. As they lay dying. The Atlantic. 2015;2015.Google Scholar
  11. 11.
    Cook R. Cherokee man with ALS wants to die by donating organs: the Atlanta journal constitution; 2010 [cited 2019 January 10]. Available from: https://www.ajc.com/news/local/cherokee-man-with-als-wants-die-donating-organs/m54v91KOBL833r4toGTSQI/.
  12. 12.
    Shakerdge K. A dying Man's wish to donate his organs gets complicated: National Public Radio; 2016 [updated December 26; cited 2019 January 10]. Available from: https://www.npr.org/sections/health-shots/2016/12/26/499494248/a-dying-man-s-wish-to-donate-his-organs-gets-complicated.
  13. 13.
    • Rakke YS, Zuidema WC, Hilhorst MT, Erdman RA, Massey EK, Betjes MG, et al. Seriously ill patients as living unspecified kidney donors: rationale and justification. Transplantation. 2015;99(1):232–5 This is an important article because it is the first to describe living kidney donation by patients with life-limiting illness. CrossRefGoogle Scholar
  14. 14.
    • Troppmann C, Santhanakrishnan C, Sageshima J, McVicar J, Perez R. Barriers to live and deceased kidney donation by patients with chronic neurological diseases: implications for donor selection, donation timing, logistics, and regulatory compliance. Am J Transplant. 2018; This is an important article because it reports the experience of deceased and living organ donation by patients with neurological life-limiting illness in the United States. Google Scholar
  15. 15.
    • Ansari S, Bromberg MB, Gibson SB. Physician perceptions about living organ donation in patients with Amyotrophic Lateral Sclerosis. Clin Neurol Neurosurg. 2017;160:125–9 This is an important article because it provides empirical data on neurologists' perspectives about organ donation by patients with ALS. CrossRefGoogle Scholar
  16. 16.
    Kipnis K. Vulnerability in research subjects: a bioethical taxonomy. National Bioethics Advisory Commission [NBAC] ethical and policy issues in research involving human participants 2001;Volume II: Commissioned Papers, 2004.Google Scholar
  17. 17.
    •• OPTN/UNOS Ethics Committee. Living Organ Donation by Persons with Certain Fatal Diseases. 2017. This report provides ethical guidelines for living organ donation by persons with life-limiting illness. Google Scholar
  18. 18.
    •• Ross LF, Thistlewaite JR. Prisoners as living donors: a vulnerabilities analysis. Camb Q Healthc Ethics. 2018;27(1):93–108 This is a very important paper which develops an ethical framwork using the vulnerabilities approach for prisoners who want to be living donor. CrossRefGoogle Scholar
  19. 19.
    Williams T. Jailed Sisters are Released for Kidney Transplant: The New York Times; 2011 [cited 2019 January 15]. Available from: https://www.nytimes.com/2011/01/08/us/08sisters.html.
  20. 20.
    James SD. Scott Sisteres kidney donation threatens organ transplant Laws: ABC news; 2010 [cited 2019 January 15]. Available from: https://abcnews.go.com/Health/scott-sisters-kidney-donation-threatens-organ-transplant-laws/story?id=12515616.
  21. 21.
    Pollock A. On the suspended sentences of the Scott sisters: mass incarceration, kidney donation and the biopolitics of race in the United States. Sci Technol Hum Values. 2015;40(2):250–71.CrossRefGoogle Scholar
  22. 22.
    Goldberg A, Frader J. Prisoners as living organ donors: the case of the Scott sisters. Am J Bioeth. 2011;11(10):15–6.CrossRefGoogle Scholar
  23. 23.
    Ross S. With organ donation, Let Prisoners Give Life to Others: The New York Times; 2013 [cited 2019 January 17]. Available from: https://www.nytimes.com/roomfordebate/2013/04/25/should-prisoners-be-allowed-to-donate-their-organs/with-organ-donations-let-prisoners-give-life-to-others.
  24. 24.
    US Department of Justice. Program Statement, Patient Care: Federal Bureau of Prisons,; 2014 [cited 2019 January 17]. Available from: https://www.bop.gov/policy/progstat/6031_004.pdf.
  25. 25.
    Millis MA, Simmerling M. Prisoners as organ donors: is it worth the effort? Is it ethical? Transplant Proc. 2009;41(1):23–4.CrossRefGoogle Scholar
  26. 26.
    Gates ML, Turney A, Ferguson E, Walker V, Staples-Horne M. Associations among substance use, mental health disorders, and self-harm in a prison population: examining group risk for suicide attempt. Int J Environ Res Public Health. 2017;14(3).Google Scholar
  27. 27.
    Hadden KB, Puglisi L, Prince L, Aminawung JA, Shavit S, Pflaum D, et al. Health literacy among a formerly incarcerated population using data from the transitions clinic network. J Urban Health. 2018;95(4):547–55.CrossRefGoogle Scholar
  28. 28.
    Hsu CY, Lin F, Vittinghoff E, Shlipak MG. Racial differences in the progression from chronic renal insufficiency to end-stage renal disease in the United States. J Am Soc Nephrol. 2003;14(11):2902–7.CrossRefGoogle Scholar
  29. 29.
    Federal Bureau of Prisons. Inmate Race: US Government, Departement of Justice; 2018 [updated November 24; cited 2019 January 16]. Available from: https://www.bop.gov/about/statistics/statistics_inmate_race.jsp.
  30. 30.
    Guidance on the use of increased infectious risk donors for organ transplantation. Transplantation. 2014;98(4):365–9.Google Scholar
  31. 31.
    Tedla FM, Yap E. Apolipoprotein L1 and kidney transplantation. Curr Opin Organ Transplant. 2019;24(1):97–102.CrossRefGoogle Scholar
  32. 32.
    Freedman BI, Julian BA, Pastan SO, Israni AK, Schladt D, Gautreaux MD, et al. Apolipoprotein L1 gene variants in deceased organ donors are associated with renal allograft failure. Am J Transplant. 2015;15(6):1615–22.CrossRefGoogle Scholar
  33. 33.
    Zwang NA, Shetty A, Sustento-Reodica N, Gordon EJ, Leventhal J, Gallon L, et al. APOL1-associated end-stage renal disease in a living kidney transplant donor. Am J Transplant. 2016;16(12):3568–72.CrossRefGoogle Scholar
  34. 34.
    Kofman T, Audard V, Narjoz C, Gribouval O, Matignon M, Leibler C, et al. APOL1 polymorphisms and development of CKD in an identical twin donor and recipient pair. Am J Kidney Dis. 2014;63(5):816–9.CrossRefGoogle Scholar
  35. 35.
    Doshi MD, Ortigosa-Goggins M, Garg AX, Li L, Poggio ED, Winkler CA, et al. APOL1 genotype and renal function of black living donors. J Am Soc Nephrol. 2018;29(4):1309–16.CrossRefGoogle Scholar
  36. 36.
    Newell KA, Formica RN, Gill JS, Schold JD, Allan JS, Covington SH, et al. Integrating APOL1 gene variants into renal transplantation: considerations arising from the American Society of Transplantation expert conference. Am J Transplant. 2017;17(4):901–11.CrossRefGoogle Scholar
  37. 37.
    Lentine K, Kasiske B, Levey A, Adams P, Alberú J, Bakr M, et al. KDIGO clinical practice guideline on the evaluation and Care of Living Kidney Donors. Transplantation. 2017;101(8S Suppl 1):S1–S109.Google Scholar
  38. 38.
    British Transplantation Society. Guidelines for Living Donor Kidney Transplantation 2018 [cited 2019 January 16]. Available from: https://bts.org.uk/wp-content/uploads/2018/07/FINAL_LDKT-guidelines_June-2018.pdf.
  39. 39.
    • Gordon EJ, Amomicronrtegui D, Blancas I, Wicklund C, Friedewald J, Sharp RR. African American living Donors' attitudes about APOL1 genetic testing: a mixed methods study. Am J Kidney Dis. 2018;72(6):819–33 This is an important paper describing AA living donors' attitudes about APOL1 genetic testing. CrossRefGoogle Scholar
  40. 40.
    • Gordon EJ, Wicklund C, Lee J, Sharp RR, Friedewald J. A national survey of transplant surgeons and nephrologists on implementing Apolipoprotein L1 ( APOL1) genetic testing into clinical practice. Prog Transplant. 2018:1526924818817048 This is an important article describing physicians' practices and perspectives on APOL1 testing in living kidney donation. Google Scholar
  41. 41.
    Freedman BI, Moxey-Mims M. The APOL1 long-term kidney transplantation outcomes network-APOLLO. Clin J Am Soc Nephrol. 2018;13(6):940–2.CrossRefGoogle Scholar
  42. 42.
    •• Ross LF, Thistlethwaite JR Jr. Introducing genetic tests with uncertain implications in living donor kidney transplantation: ApoL1 as a case study. Prog Transplant. 2016;26(3):203–6 This is a very interesting article which provides an ethical analysis of different options for APOL1 genetic testing in living donor kidney transplantation. CrossRefGoogle Scholar
  43. 43.
    Edwards A, Elwyn G. Shared decision-making in health care: achieving evidence-based patient choice. Oxford: Oxford University Press; 2009. 414 pGoogle Scholar
  44. 44.
    Purnell TS, Luo X, Cooper LA, Massie AB, Kucirka LM, Henderson ML, et al. Association of race and ethnicity with live donor kidney transplantation in the United States from 1995 to 2014. JAMA. 2018;319(1):49–61.CrossRefGoogle Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  • Virginie Vallée Guignard
    • 1
  • Marie-Chantal Fortin
    • 1
    • 2
    • 3
    Email author
  1. 1.Faculty of MedicineUniversité de MontréalMontréalCanada
  2. 2.Centre de recherche du Centre hospitalier de l’Université de Montréal (CRCHUM)MontréalCanada
  3. 3.Canadian Donation and Transplant Research ProgramEdmonton in AlbertaCanada

Personalised recommendations