Since so much in the debate revolve around the problem of inducements, I wondered if we are all on the same page with respect to what 'inducements' really are.
The problem of inducement is fundamental in the consideration of its ability to compromise the 'volunteer''s (be this donating organs, tissues or participating in clinical research) independence to make an autonomous, free will decision. This is a very clear inviolable ethical position that has been internationally accepted. See Belmont Report.
The difficulty lies in the interpretation what constitutes an 'inducement'.
Our Bioethics Advisory Committee (BAC), while proudly trumpeting its Consultation Paper on egg donation, curiously surfacing just before the Organ Transplant discussion began, waffles a bit about the issue of inducements.
"In Singapore, the general ethical framework relating to the donation of tissue (which includes eggs) for research was established by the BAC in 2002. Such donation should be outright gifts and there should be no financial incentives, although reasonable reimbursement of expenses incurred should be allowed.
This ethical requirement in relation to the donation of gametes and embryos was taken up in legislation. Under Section 13 of the Human Cloning and Other Prohibited Practices Act (Cap 131B, 2005 Rev Ed), a person is prohibited from giving or receiving valuable consideration for the supply of human eggs, or to otherwise make an offer to that effect. Valuable consideration has been defined as including “any inducement, discount or priority in the provision of a service to the person, but does not include the payment of reasonable expenses incurred by the person in connection with the supply.” Reasonable expenses include expenses relating to the collection, storage or transport of the eggs. However, the possibility of compensation for time, risk and inconvenience has not been addressed. Based on the general ethical principle of fairness, it appears that there could be circumstances where allowing reasonable compensation for time, risk and inconvenience is consistent with the existing ethical framework."
After all that, the paper concludes:
"Compensation for contributing eggs for research in an amount and manner that is fair and without inducement is likely to require the attention of ethicists, policy makers and regulators in the foreseeable future."
Yes....we all know it requires the attention of ethicists, policy makers and regulators....in the foreseeable future. And all this time I thought the ethicists were in the BAC.
The shadowy National Medical Ethics Committee, an organ of the Ministry of Health (you still can't find any information about the NMEC in MOH website!), while happily supporting the BAC, hasn't published its own comments about the problem of inducements. To find out what they think I had to korek out this information from their 2007 recommendations on Phase 1 (normal volunteers) clinical trials.
In that paper they say:
"Payments for participation in Phase I trials should be commensurate with the burden of participation. However, excessive remuneration or other forms of benefit are improper if they are such as to persuade people to volunteer against their better judgment."
Yet in their recommendations they say:
"The remuneration and other benefits offered should not be such as to induce people to volunteer against their initial judgment."
I am not a person of words, and not a 'semantologist', but it seems like there is a difference between initial judgement and better judgement.
This is what I think I can understand from what our local ethics groups have been saying. I am not sure I am very clear. I guess, maybe I am a bit dense. But I will leave readers to draw their own conclusion if the ethics people are themselves are very clear about the issue. And if they are prepared to deal with the issues now that the Act has been passed. Or just look the other way?
5 years ago