1. POST DONATION REGRET:
WHY THE CURRENT
INFORMED CONSENT
PARADIGM DOES NOT WORK
Prof. Leonardo D. de Castro
Director for Capacity Development,
Centre for Biomedical Ethics

2. Decastro ORGAN DONATION AND REGRET
REGRET

3. Decastro ORGAN DONATION AND REGRET
REGRET
• regret |riˈgret |
• verb ( regrets, regretting , regretted ) [ with obj. ]
• feel sad, repentant, or disappointed over (something that has
… been done, esp. a loss or missed opportunity): she
immediately regretted her words | [ with clause ] : I regretted
that he did not see you.
• • used in polite formulas to express apology for or sadness
over something unfortunate or unpleasant: any
inconvenience to readers is regretted | [ with clause ] : we
regret that no tickets may be exchanged.
• • archaic feel sorrow for the loss or absence of (something
pleasant): my home, when shall I cease to regret you!

4. Decastro ORGAN DONATION AND REGRET
―Commodification and exploitation: arguments
in favour of compensated organ donation‖
(J Med Ethics 2003;29:142-146)
• Offering compensation for organs does not necessarily
lead to exploitation—on the contrary, it may be regarded
as a necessity in efforts to minimise the level of
exploitation that already exists in current organ
procurement systems

5. Decastro ORGAN DONATION AND REGRET

6. Decastro ORGAN DONATION AND REGRET

7. Decastro ORGAN DONATION AND REGRET

8. Decastro ORGAN DONATION AND REGRET
BLAMING DONORS
• Not donors but vendors
• Blame for involvement in trafficking
• Collaboration with syndicates
• Free and informed consent
―THEY HAVE THEMSELVES TO BLAME FOR THEIR
SUFFERING‖

9. Decastro ORGAN DONATION AND REGRET
DETERMINING VALIDITY OF CONSENT
• INPUT vs OUTPUT
• No surprise that determination is input oriented:
– Informed (Accurate, adequate and relevant information)
– Free (No duress or coercion)
– Express

10. Decastro ORGAN DONATION AND REGRET
• The best way to determine the effectivity of what comes
in is through what comes out
• OUTPUT – a good indicator of the quality of input to ―free
and informed‖ consent

11. Decastro ORGAN DONATION AND REGRET
• Previous studies: social and economic outcomes after
the organ sale but have looked at the quality of consent
mainly in terms of the input

12. Decastro ORGAN DONATION AND REGRET
REASONS FOR ―DONATION‖
REASONS INDICATED
Monetary/Economic
To help patient
Altruism & poverty
Self-challenge

13. Decastro ORGAN DONATION AND REGRET
IMPROVEMENT OF ECONOMIC PROSPECTS
IMPROVED
YES (128)
NO (166)
CAN'T SAY (17)
4th Qtr

14. Decastro ORGAN DONATION AND REGRET
Did donor think he was ‗forced‘?
FORCED
YES (90)
NO (220)
CAN'T SAY (1)

15. Decastro ORGAN DONATION AND REGRET
DID DONOR REGRET DECISION TO DONATE?
REGRET
YES
NO
OTHERS

16. Decastro ORGAN DONATION AND REGRET
DID NEIGHBOURS HAVE A LOWER REGARD
FOR DONOR AFTER DONATION?
LOWER REGARD
YES (99)
NO (172)
OTHERS (40)

17. Decastro ORGAN DONATION AND REGRET
DID YOU VIOLATE THE LAW?
LAW VIOLATOR
YES 58.5%
NO (40.5%
OTHERS (1%)

18. Decastro ORGAN DONATION AND REGRET
DID YOU COMMIT A SIN?
SINNER
YES (211)
NO (89)
MAYBE (11)

19. Decastro ORGAN DONATION AND REGRET
WILL YOU RECOMMEND DOING THE SAME
THING TO OTHERS?
RECOMMEND TO OTHERS
YES (144)
NO (160)
OTHERS (7)

20. Decastro ORGAN DONATION AND REGRET
• OUTCOME not consistent with donors‘ expectations and
values

21. Decastro ORGAN DONATION AND REGRET
CONTEXT: ORGAN TRAFFICKING
• Classical informed consent paradigm does not work
• Exploits vulnerability of donors
• Implementation of output oriented informed consent
paradigm
• Need for paternalistic, preventive protection

22. Decastro ORGAN DONATION AND REGRET
Good day!