In a decision that is at once a blow to science, to medicine, and (potentially) to those suffering with spinal disfunction, a recent spinal injury study involving stem cells has been blocked, not by scientists, but by a "Ministry of Health ethics committee."
Cynthia Darlington, from the ethics committee, says not enough is known about stem cells for such a trial to be carried out safely. Ms Darlington says the Society might have given people false hope.It is unclear from the brief report whether the decision is more about safety, or more about a concern that the research "might have given people false hope." According to the Spinal Cord Society, the study using stem cells from the nose was intended to replicate a procedure developed by Dr Carlos Lima in Portugal (about which more here, and here). The procedure has been performed on fifty patients, some of whom have reported regaining some sensation and function. But the ethics committee here says "not enough is known about stem cells" for permission to be given to carry out this local trial.
But surely the point of a trial is that not enough is known -- the very point is to learn more, isn't it? To know more? To push back uncertainty?
It's unclear from reports whether the audit of Dr Lima's cases has been carried out, or if the trial has been cancelled before this has been done, but the brief report gives no indication of any specific concerns with the safety of Dr Lima's procedures. Rather, it appears to be simply a decision from on high to stop what should have been potentially ground-breaking medical research, and given the reported opposition of a research competitor at the Burwood Spinal Unit in Christchurch, possibly an anti-competitive one.
Writing about the rise of ethics committees such as those making this decision, scientist Stuart Derbyshire calls it "regulation by another name," and its difficult to see it any other way. Rather than studying the actual ethics of a procedure or a study, ethics committees, he says, simply pay hand-wringing obeisance to uncertainty, and all too frequently stand in the way of researchers acquiring real certainty, and in achieving real medical breakthroughs.
Such committees, are often stacked with people unfamiliar with science or medicine, with the result that "too often priority [is given] to the sensitivities and feelings of non-specialists over the expertise of specialists"; they are, he says, "the product of an increasing suspicion regarding the nefarious aims of scientists" -- they represent "the capitulation of scientific authority," with not even the saving grace of efficacy in their stated aims:
Although the aim [of the committees and their procedures] is to prevent harm to subjects and patients, there is no evidence that the application forms, review procedures and consent materials actually do this...Derbyshire concludes that as a consequence of the rise of regulation by ethics committe, research questions increasingly tend be restricted to conventional, safe and popular areas, with inquiry characterised by deference rather than the challenging of established wisdom, and with what amounts to censorship supplanting academic freedom.
A strong claim, but given the controversy over stem cell research -- with the dissent coming largely from the religious and, locally, from the tangata whenua quarter - one with which I have a lot of sympathy.
Stem cell researchers Thilo Spahl and Thomas Deichmann point out that stem cell research has huge promise for as yet unknown treatments. It "promises the possibility of treatments and cures for a host of different serious medical conditions" -- "it is research that is daily pushing back the boundaries of scientific knowledge." Or it would be, if such research was allowed, "even if the research involves the questioning of contemporary taboos." Such taboos must be challenged, they say, in order to free up scientific research, "which is the very condition upon which scientific discoveries and breakthroughs are made." They conclude:
Developing a morality that is grounded in the attempt to better the human condition is an important task for those of us who wish to live in a society in which we can take full benefit of the advantages which current science offers us.Hear, hear! As philsopher Craig Biddle said in a similar context, "it's good to play God."
NB: The comments on ethics committees and stem cell research come from an excellent analysis called Science vs. Superstition: The case for a new scientific enlightenment. It can be found in PDF form at the Policy Exchange site.
LINKS: Stem cell trial blocked - Newswire
Stem cell trial blocked by ministry - Radio NZ
Stem cells from the nose - Spinal Cord Society of NZ
Clinical trials - Spinal Cord Society of NZ
Home page - Spinal Cord Society of NZ
Olfactory tissue transplantation for spinal research (Part 1) - Laurance Johnston, Alternative & Innovative Therapies for Physical Disability
Olfactory tissue transplantation for spinal research (Part 2) - Laurance Johnston, Alternative & Innovative Therapies for Physical Disability
Science vs. Superstition: The case for a new scientific enlightenment - Policy Exchange
Of mice and men - Craig Biddle, The Objective Standard
RELATED POSTS ON: Health, Science, Ethics, Politics-NZ