There was once a time when I placed much faith in the UK's governance of reproductive and genetic technologies. But after a string of actions that are a mix of the rushed and the unjustified, now I am reluctant to offer the benefit of the doubt. It's not just that the National Heath Service is offering 15,000 pounds ($32,000) to surrogate mothers or approving genetic deselection to avoid congenital squinting. Current proposals would be significant steps in the erosion of the key bioethical principle of informed consent.
The latest moves are considerations by the government to alter the long-debated bill to revise oversight of assisted reproduction and research with embryos. Under the its current version, tissue donors must consent for their cells to be used in cloning-based stem cell research, and children must be "competent" in order to give consent. This makes sense, even beyond the typical goals of informed consent: The cloning process raises novel questions, and many potential research subjects will be opposed to the creation of embryonic clones of themselves. Furthermore, if a stem cell line were to be successfully derived through this technique, the subject's genetic material could be propagated and spread throughout the world, raising concerns of genetic privacy.
Some researchers, though, are pressuring for two changes, both of which are under consideration. One would allow cloning research using banked tissues whose donors did not give consent for their cells to be used in that manner. And under the other, the requirement for the "competence" of the child would be removed. It is unclear from news reports if the child's consent would be presumed, or would need to be obtained from the parents.
(Using an unfortunately common tactic, the advocates for this change cite the medical necessity of cloning-based stem cell research in a way that distorts the fact that no stem cell lines have yet been derived in this manner. This language is not only unchallenged by the media, but is parroted.)
Regardless, there is a clear trend on both sides of the Atlantic in bioethics rhetoric, recommendations, and policy. The potential benefits of research are increasingly seen as more important than the need to obtain informed consent.
In the United Kingdom, for example, Prime Minister Gordon Brown recently proposed that consent for postmortem organ donation be presumed. And here in the US, a panel of the esteemed Institute of Medicine recommended that prisoners be "permitted" to participate in clinical trials. The former was shot down amid a barrage of criticism, but the latter proposal seems to have traction, despite the fact that true voluntary consent by prisoners is essentially impossible due to institutionalized power relations.
Of course, these are examples of a common tension within bioethics. But there are strong reasons, many of which are historical, that the first sentence of the Nuremberg Code is, "The voluntary consent of the human subject is absolutely essential."
Previously on Biopolitical Times: