1. Should Children Ever be able to serve as Living Solid Organ Donors? Mary Ellen Olbrisch, PhD James L. Levenson, MD Department of Psychiatry and The Hume-Lee Transplant Center Virginia Commonwealth University Joel Newman United Network for Organ Sharing

2. What We Will Cover UNOS data regarding children as living solid organ donors in the U.S. Proposed guideline to make age<18 an absolute contraindication to living solid organ donation Legal status of minors Relevant developmental issues Criteria for living solid organ donation Ethical analysis Recommendations

3. UNOS Data Regarding Children as Living Kidney Donors 1988-2007* Children Ages 6-10: 1 donor in 1998 Children Ages 11-17 –45 donors total –1988-1992: 18 –1993-1997: 16 –1998-2002: 9 total, 5 in 1998 –2003-2007: 2, including 1 in 2006 * Based on OPTN data as of November 23, 2007; Delmonico and Harmon (2002) reported a total of 60 children as donors from the period 1987- 2000, time periods are not identical and total numbers from either source may not be accurate

4. UNOS Data Regarding Children as Living Liver Donors 5 cases reported, 1 in 2007 UNOS Data Regarding Children as Living Lung Donors No case reported

5. Consensus Conferences and Policies Kansas City Conference (2000): “Although minors (less than 18 years of age) have successfully donated kidneys to family members in rare instances, utilizing a minor as a live donor remains controversial and requires careful donor consideration” Amsterdam Forum (2004): “Minors less than 18 years of age should not be used as living kidney donors. CMS: recent requirement for programs to have a written protocol for living donor evaluation, many programs did not have one prior to this requirement

6. Consensus Conferences and Policies (continued) UNOS draft resource document, 2007: CONTRAINDICATIONS TO LIVING DONATION The following reasons could exclude a living donor candidate from donating based upon scientific data for medical risk, psychological assessment and/or consensus on best practice. Absolute Exclusion Criteria: ･ “Age < 18 years” Not a policy, not intended to mandate practice

7. Consensus Conferences and Policies (continued) ASTS vocal in making changes to the document U.S. transplant community unable to reach a consensus regarding this issue 2008, UNOS draft resource document, still in draft form, now reads: THE FOLLOWING REASONS COULD EXCLUDE A LIVING DONOR CANDIDATE FROM DONATING: Age < 18 years, or mentally incapable to make an informed decision

8. U.S. Courts Have sometimes permitted donation by incompetent child via parental consent. Typically, the court has based this on the argument that it was in the child’s best interests to do so. –Questionable twist of “best interests,” i.e. saving one’s sibling –Who should judge the donor child’s best interests? Note parents’ conflict of interest

9. How Old is Old Enough to stay home alone without adult supervision? to baby-sit for a younger child? to marry? to be held criminally responsible for one’s actions? to drive a motor vehicle? to die for one’s country? to vote for local and national leaders? to consume alcohol? to donate blood? to donate bone marrow? to donate a kidney or part of a liver?

11. New Zealand Health Minister David Cunliffe intervened after a teenage mother, who wanted to give part of her liver to her 10-month-old daughter, Teyah, ill with biliary atresia,was told she was not old enough to be a donor. “I could join the army and go overseas and die for my country but I can't save my daughter's life.” - Kataraina Pewhairangi, 18 http://www.stuff.co.nz/print/4436660a20475.html 3/12/2008

12. Developmental Issues CNS development continues gradually through adolescence Brain maturation, including development of executive functions, such as planning, impulse control and weighing risks and rewards, is not complete until the mid- twenties Adolescents typically remain dependent on their parents, who may most want them to be organ donors.

13. Developmental Issues (continued) Youthful idealism may lead minors to be more willing to donate than more mature individuals with a balanced perspective on duties to self as well as care for others Youthful sense of invulnerability may lead adolescents to minimize assessments of risks to themselves Developmental task of identity formation may influence youth decision making and risk taking

14. Ethical Issues Do no harm Consent/Assent Do not exploit Protect from exploitation by others Autonomy Justice Utilitarianism vs. Deontological theories and values

15. Basic criteria for living solid organ donation Capacity/competence Willing and free of coercion Medically suitable Psychologically suitable Fully informed of risks and benefits for both donor and recipient

16. Criteria applied to minors Capacity/competence –Some adolescents have sufficient capacity.* Willing and free of coercion –Problematic, but coercion risk does not suddenly disappear at age 18.* Medically suitable –Not age dependent Psychologically suitable –Issues of capacity and coercion; otherwise not age dependent* Fully informed of risks and benefits for both donor and recipient –Not age dependent* * Note paucity of data regarding the above

17. Basic criteria for trivial risk donation (e.g. blood, bone marrow) Capacity/competence –Parental consent in case of incompetent minors Willing and free of coercion –No longer applicable Medically suitable –Rarely an issue Psychologically suitable –No longer applicable Fully informed of risks and benefits for both donor and recipient –No longer applicable

18. Conclusions and Recommendations The frequency of children becoming living solid organ donors has decreased considerably over the past twenty years. All living organ donors are owed great care to determine that they are not subject to coercion or exploitation. Minors are particularly vulnerable due to dependence, incomplete brain maturation and incomplete identity development.

19. Conclusions and Recommendations (continued) A general principle discouraging solid organ donation by children under the age of 18 appears warranted. Extreme caution must be observed in considering any preadolescent child as a living solid organ donor.

20. Conclusions and Recommendations (continued) Exceptions may be ethically permissible. Minors should be evaluated as individuals with special attention to developmental issues that may impact any expressed desire to be a living organ donor. Thorough psychological evaluation to assess general intelligence, reasoning and judgment, personality, family dynamics, emotional attachment to the recipient, the experience of coercion or manipulation, and comprehension of risks and benefits should be conducted.

21. Conclusions and Recommendations (continued) An independent advocate such as a guardian ad litem should be appointed. Particular safeguards for children who might become living solid organ donors protects not only children, but transplant physicians, transplant programs, and public support for transplantation.

22. Recommendations: Delmonico and Harmon Minors can fulfill the criteria when –Both donor and recipient highly likely to benefit Esp. identical twins (no immunosuppressive Rx) –Risk for donor extremely low –Other options exhausted Cadaveric donation not timely No suitable adult donor –Minor consents without coercion Established by independent advocate

23. References The Ethics Committee of the Transplantation Society. The Consensus Statement of the Amsterdam Forum on the Care of the Live Kidney Donor. Transplantation, 2004, 78 (4): 491-492. The Authors for the Live Organ Donor Consensus Group Consensus Statement on the Live Organ Donor. JAMA. 2000;284:2919-2926. Council on Ethical and Judicial Affairs AMA. The use of minors as organ and tissue donors. Code Med Ethics Rep 1994; 5:229- 242. Delmonico, FL and Harmon, WE. The Use of a Minor as a Live Kidney Donor. American Journal of Transplantation 2002; 2: 333-336