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Cloning, Children, and Consent

Posted by Jesse Reynolds on February 8th, 2008

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:

Doubts on ScienceDebate2008 from Nature

Posted by Jesse Reynolds on February 8th, 2008

The journal Nature has raised serious apprehension about the proposal for a presidential candidates' debate on science. An editorial states:

Well meant though it may be, the idea of Tim Russert or some other journalist-interrogator looking Republican hopeful John McCain in the eye and asking "What balance will you seek in federal science funding between major-programme project research and investigator-initiated basic-research grants?" is somewhat fantastical.

It is also slightly disturbing. For all that it claims to be a 'grass-roots' phenomenon, the proposed debate can be seen as an attempt by various élite institutions to grab the microphone and set the agenda from the top down.
And, in an accompanying column, Harvard's David Goldston points out that
The increasing tendency to conflate science questions — Are we experiencing man-made climate change? — with policy questions — What, if anything, should we do about it? — has been a damaging trend. It has helped to turn science into a political football and has muddied policy debates. At a 'science debate', candidates will try to claim that their position is the one supported by 'science', and the very structure of the debate will send voters the faulty message that these are questions that the natural sciences can resolve. Framing questions of economics, ethics and other aspects of policy as 'science issues' does no favour for either science or politics. And it makes one wonder if the sponsors of the debate merely want to find out whether the candidates agree with their personal opinions on these topics.

Previously on Biopolitical Times:

“Roots in a Test Tube”

Posted by Osagie Obasogie on February 7th, 2008

Henry Louis Gates Jr. with Jackie Joyner-Kersee

On the heels of the acclaimed 2006 PBS series African-American Lives- where Harvard's Henry Louis Gates Jr. uses genetic ancestry testing to trace several prominent Blacks' genealogies - comes the second installment, African-American Lives 2. Here, Gates brings out a new all-star cast of Black entertainers, athletes, and other icons to demonstrate how genetic ancestry testing can subvert the genealogical disconnect created by the slave trade and tell African-Americans which tribes and regions they came from - all with the presumed pinpoint accuracy of DNA technologies, or what Gates calls "roots in a test tube." For an interesting discussion on these technologies' promises and pitfalls, check out Troy Duster's review of the series' first installment. Duster makes an interesting observation that might be helpful to keep in mind:

. . . the series performs a disturbing sleight of hand. Conventional wisdom has it that we can choose our friends, but that our families are a given. But with long-term genealogical work, there is a sense in which this can be inverted. We each have two parents, four grandparents, eight great-grandparents, etc. As Gates points out . . current technology permits us to link via DNA analysis to only two specific lines. On the Y chromosome, one's father's father's DNA, going back as far as we can locate the genetic material, can be determined with a high degree of certainty. . . .On the female side, mitochondrial DNA (mtDNA) can link one's mother's mother's mother going back as far as we can garner the DNA. So, while we have 64 great-great-great-great-grandparents, the technology allows us to locate only two of those 64, if we're going back six generations, as our real legacy and genetic link to the past. But what of the other 62? Those links are equal contributors to our genetic makeup, and we ignore them only because we do not have access to them. What an arbitrary "choice" of a branch on the family tree!

Should rich and poor alike be free to sell their kidneys?

Posted by Marcy Darnovsky on February 6th, 2008

A massive kidney trafficking racket exposed last week in India continues to unravel. Indian publications (1, 2) are tracking its twists and turns, but the brief flurry of U.S. coverage (1, 2) has largely subsided.

The story so far: Dozens of doctors, nurses, and medical professionals appear to have participated in the illegal procurement of some 500 kidneys, mostly from poor workers, that were sold to foreign clients. Some of the kidney “donors” were offered sums of about $1000. Others were kidnapped and knocked out, learning only when they regained consciousness that their organs had been harvested. They were then threatened with their lives if they told anyone about the racket.

The mastermind of the operation is still being sought by Indian police and Interpol. Several similar scandals in recent years have raised the question of whether hospitals and police have been involved.

For most, kidney trafficking exploits the desperation of both buyers and sellers, and its horrors call for stricter enforcement of laws against it. But some libertarians, including market enthusiast Ron Bailey at Reason Online and the Cato Institute's Arthur Matas, counsel instead that the sale of kidneys be legalized.

The only country now on that path is Iran. There, the state sets an initial price and runs kidney referral agencies, but haggling between buyers – who have money – and sellers – who urgently need it – is common. A 2007 documentary called Iranian Kidney Bargain Sale gives a blow-by-blow account, and it’s not pretty.

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