1. Can minors be bone marrow donors? © Copyright 2010

2. Case #1 A young woman with leukemia needs bone marrow, and her 16-year-old brother is a perfect match. He’s thrilled about “saving” her life. The problem: he’s mentally disabled and has the cognitive abilities of an 8-year-old. Should he be allowed to donate? Pentz et al. Oncologist. 2008.

3. Case #2 A 9 year old has aplastic anemia. She has two brothers. Both are tested and both are histocompatible. One brother was tolerant of testing, the other was anxious and distraught. Should minors be permitted to donate? How to choose when two are histocompatible?

4. Key questions At what age can a child consent or assent to donate bone marrow? What is relationship between the siblings? Is the potential donor emotionally stable? Are the interests of the donor protected? Who gets to decide?

5. Ethical theories Intra-familial utilitarianism Best interest of the donor and recipient Family duties and obligations Modified (or involuntary) altruism

6. Pediatric transplants using sibling donors in the U.S. Year Total transplants using minor sibling donors 2000 1870 2002 1880 2004 2060 2005 2250 Center for International Blood and Marrow Transplant Research

7. Ethical issues for donors Coercion Neglect Health problems Mental health problems

8. Coercion Most donors report that they feel unable to refuse. One third say they felt coerced by parents or a doctor. The other two thirds said their consciences wouldn’t allow them to decline. MacLeod et al. J Pediatr Psychol. 2003.

9. Neglect Sick children and their donor siblings have different, possibly even conflicting, needs. Parents and care-providers are focused on the sick child. Most programs do not have separate doctors or services for the donor. Opel et al. J Clin Ethics. 2006.

10. Risks to the donor Pain of the procedure, Risk of general anesthesia Guilt and responsibility if sick sibling dies. Anxiety Packman et al. J Dev Behav Pediatr. 1997.

11. Emotional impact Siblings’ reported feelings after transplant Positive Positive and Negative Negative Successful 87.5(7) 12.5(1) 0.0 Unsuccessful 42.8(3) 42.8(3) 14.2(1) Total 66.6(10) 26.6(4) 6.6(1) MacLeod et al. J Pediatr Psychol. 2003.

12. Feelings good and bad Donors in successful transplants reported feeling better about themselves and closer to their families as a result. Donors whose siblings died post-transplant had more anger, guilt and self-blame. MacLeod et al. J Pediatr Psychol. 2003.

13. Benefits to the donor A happier, more functional family Comfort in knowing that all possible measures were taken Fulfillment of a family duty Saving a life Pentz. J Clin Ethics. 2006.

14. Donor siblings need care “Siblings should not be neglected at any stage of the BMT process. They should be seen as an integral part of the family system, and acknowledged as important participants in the treatment process.” * “The oncology community may want to enhance its support of donor and non-donor siblings to help avoid the negative sequelae experienced by some.” ** * Packman et al. J Dev Behav Pediatr. 1997. **Pentz. Oncologist. 2008.

15. Donor advocates The M.D. Anderson Cancer Center appoints a medical and psychological team that “focuses solely on the welfare of the donor, whereas the cancer patient’s team focuses solely on the patient. Conflicts of interest inherent in one medical team caring for both the patient and the donor are avoided and, presumably, more attention can be paid to the donor’s needs.” Few other centers have such programs. Pentz et al. Oncologist. 2008.

16. Legal cases Most legal cases involve kidney transplants: –Strunk v. Strunk (Ky.1969), 445 S.W.2d 145Strunk v. Strunk (Ky.1969), 445 S.W.2d 145 –Hart v. Brown, (Conn. 1972) 289 A.2d 386 One of the few bone marrow transplant cases that went to court was unusual in that the proposed donors were half-siblings who had no relationship with the recipient –In Curran v. Bosze, the Illinois Supreme Court ruled that 3 ½- year-old twins did not have to be tested for HLA compatibility with a 12-year-old half-brother with acute undifferentiated leukemia. The three children shared the same father but were born to different mothers. The twins barely knew their half- brother. The twins’ mother was adamant that they not be subjected to bone-marrow extraction, and the 12-year-old had at best a tiny chance of surviving even with marrow from one of the twins. –For the actual court decision in Curran v. Bosze: http://scholar.google.com/scholar_case?case=40904563662024 67272&q=curran+v+bosze&hl=en&as_sdt=2002 http://scholar.google.com/scholar_case?case=40904563662024 67272&q=curran+v+bosze&hl=en&as_sdt=2002

17. Other questions: Do things change if the sick child needs more than one transplant? Do things change if the donor is brought into existence to be a donor? Is IVF/PGD acceptable to select a compatible child? Can you “prep” the donor G-CSF?

18. AAP policy statement Minor sibling donation of marrow, peripheral or cord blood is morally acceptable, provided the following five standards are met: 1- No histocompatible adult is available. (However, sibling donation may be pursued before a broader search has been completed.) 2- The potential donor and sick siblings should have a close and positive relationship. AAP Committee on Bioethics. Pediatrics. 2010.

19. AAP statement - (cont’d) 3- There should be a good likelihood the recipient will survive, especially since a failed transplant can cause donor to feel responsible. 4- Psychosocial risks to the donor should be minimized through medical play-acting, answering the potential donor’s questions and giving him/her a role in making a decision. Also, the treatment team should help parents identify and attend to needs of donor. AAP Committee on Bioethics. Pediatrics. 2010.

20. AAP statement – (cont’d) 5- An advocate should be appointed to represent the potential donor. Every effort should be made to obtain the potential donor’s assent including, if needed, a consultation with a hospital ethics committee. The potential donor should be thoroughly informed about the procedure, the possible results, and the limits to his/her role in the outcome. AAP Committee on Bioethics. Pediatrics. 2010.

21. Resources A position paper on sibling donation of bone marrow: American Academy of Pediatrics Committee on Bioethics. Children as Hematopoietic Stem Cell Donors, Pediatrics. 2010 Feb;125(2):392-404.Children as Hematopoietic Stem Cell Donors A study of the emotional sequelae of sibling stem-cell donation: MacLeod, KD et al. Pediatric Sibling Donors MacLeod, KD et al. Pediatric Sibling Donors of Successful and Unsuccessful Hematopoietic Stem Cell Transplants (HSCT): A Qualitative Study of their Psychosocial Experience. J Pediatr Psychol. 2003;28(4):223- 31.Pediatric Sibling Donors of Successful and Unsuccessful Hematopoietic Stem Cell Transplants (HSCT): A Qualitative Study of their Psychosocial Experience A look at the issues of sibling donation in one case: Opel D, Diekema D. The Case of A.R.: The Ethics of Sibling Donor Bone Marrow Transplantation Revisited. J Clin Ethics. 2006;17(3):207-194.The Case of A.R.: The Ethics of Sibling Donor Bone Marrow Transplantation Revisited A study of the emotional issues involved in sibling donation: Packman W. Psychosocial impact of pediatric BMT on siblings. Bone Marrow Transplant. 1999 Oct;24(7):701-6.Psychosocial impact of pediatric BMT on siblings

22. Resources - (cont’d) A study of the psychological well-being of siblings who donate vs. those who don’t: Packman WL. Crittenden MR et al. Psychosocial consequences of bone marrow transplantation in donor and nondonor siblings. J Dev Behav Pediatr. 1997 Aug;18(4):244-53.Psychosocial consequences of bone marrow transplantation in donor and nondonor siblings Should a developmentally-disabled boy donate stem cells to his sister? Pentz RD, Haight AE et al. The ethical justification for minor sibling bone marrow donation: a case study. Oncologist. 2008 Feb;13(2):148-51.The ethical justification for minor sibling bone marrow donation: a case study An exploration of the motivations for sibling stem-cell donation: Pentz RD. Duty and altruism: alternative analyses of the ethics of sibling bone marrow donation. J Clin Ethics. 2006 Fall;17(3):227-30.Duty and altruism: alternative analyses of the ethics of sibling bone marrow donation