Directed Donation

1. Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

2. Definition • Living Directed Donation Living donor donates to known recipient with whom they have a blood or emotional relationship Well accepted in SA - URLD requires DOH approval

3. Definition • Deceased Directed Donation When a donor family directs an organ to a known recipient - Family / emotional relationship (Friends, social circles, church groups) Donor families are informed: - Recipient must be a suitable match - Rest of organs go to allocation system

4. Is Deceased Directed Donation of one organ to yourself, acceptable to SATS? E.g. Religious refusal but consent to yourself for one organ only SATS: YES E.g. Father awaiting cornea - no request but consent to donate – should he receive? SATS: YES

5. Deceased Directed Donation • Human Tissue Act no 65 of 1983 sec 3(1) • National Heath Act 61 of 2003 sec 63 Allows for deceased directed donation to a named recipient, hospital or institution.

6. Directed donation by solicitation for organs • SA raising public awareness has lead to ‘emotive’ stories in the press • At present this is not used as an appeal platform to request organs but is used to create awareness • However this may lead to an altruistic living directed donation or the possibility of deceased directed donation to a named recipient

7. USA • Billboards, news papers, websites used to put forward pleas for someone to come forward to donate for either living or deceased directed donation SATS: TO BE DISCOURAGED IN LINE WITH THE ISTANBUL DECLARATION • Example: www.toddneedsaliver.com www.matchingdonors.com www.kidneyforpatrick.com

8. www.matchingdonors.com • Living donors are able to search the site for potential recipients • SA is listed- no appeals from SA, but UK and Australia do feature – 497 recipients • Cost to recipients $295 per month, donors for free • Can pay a professional to write your biography • Website does give information re complication and legal implications to potential live donors SATS: NOT TO BE ENCOURAGED

9. www.matchingdonors.com www.matchingdonors.com

10. Rosie Murray received a kidney from Judi Bowne. They found each other on MatchingDonors.com. Judi wrote “I don't want to get your hopes up too high, but I am considering donating a kidney. I'm not sure of all that is involved. I read your profile and if I were to donate one, I think it would be to you.” Judi was tested and she was a match for Rosemarie.

11. www.kidneyforpatrick.com

12. www.toddneedsaliver.com Circumventing the list- appeal for deceased donation. Primary CA liver – low on waiting list. Todd died 8 months after transplant.

13. OPTN/UNOS Ethics Committee Dec 2009 • “The way that relationships are developed in society cannot be regulated or restricted” • “Provided the website that facilitates living donations do not require payment, does not undermine equitable allocation of organs, is altruistic and the safety of both the recipient and donor are guaranteed this is ethically acceptable”

14. American Society of Transplant Surgeons 23 Oct 2006 • “Pre-existing relationship between friends, family and communities are acceptable” • Solicited LDD “…will add an additional scarce resource, there are ethical grounds to proceed…..as long as the motivation is based in altruism, informed consent, evaluation and donor and recipient safety.”

15. Deceased directed donation by solicitation Ethical concerns: • Violation of the fair organ allocation system by allowing recipients to jump • May allow donor family to direct donations only to specific groups (e.g. racial) • Inappropriate transplant of unsuitable or less urgent recipients • Recipients with greater financial resources and public relation skills have advantage over less educated and resourced recipients

16. American Society Transplant Surgeons 23 Oct 2006 • “ASTS is opposed to solicited deceased donations as it would undermine the fairness of the organ allocation system” • It recommends its members not to become involved in such situations

17. Ethical/Legal Review • OPTN 2004 stated it was opposed to the solicitation for deceased organ donation • However, after a celebrity received a cadaver kidney following a televised appeal, OPTN stated that deceased directed donation is permissible to a named recipient in terms of the Federal guidelines, “The OPTN Final Rule.”

18. OPTN Final Rule • Section 121.8(h) – “Directed Donation. Nothing in this section shall prohibit the allocation of an organ to a recipient named by those authorized to make the donation.” • The loophole by The Final Rule has allowed solicited deceased directed donation to continue in the United States.

19. South Africa • South Africa has no guidelines on solicitation of organs, either living or deceased. • The current standing of the HTA and NHA allows for deceased directed donation to a named recipient or center. SATS POSITION STATEMENT: THE REQUEST WILL BE CONSIDERED AS FAR AS POSSIBLE WITHIN THE EXISTING NEEDS OF THOSE WAITING ON THE LIST. IT WOULD SEEM UNETHICAL TO ALLOW SOMEONE IN DIRE NEED TO DIE AS A RESULT OF A DIRECTED DONATION. SHOULD THIS BE THE SITUATION, AND THE DONATION BE INSTSTANT ON THE CONDITIONS, IT IS RECOMMENDED THAT NO ORGANS BE ACCEPTED FROM THAT DONOR.

20. Other views • Declaration of Istanbul 2008 – Principle 6a “outlaw all advertising, soliciting or brokering to prevent commercialism, trafficking or tourism.” • World Health Organization 2009 – Guiding principle no 6 “Promotion of donation by advertisement or public appeal may be undertaken in accordance with domestic regulations.”

21. Conclusion • Deceased Directed Donation is acceptable to a recipient who is family or with whom the family or donor has an emotional relationship with. • General public articles to raises awareness on organ donation is acceptable. • Soliciting for organs to be directed to yourself should not be acceptable.