This article has me queasy. Yes, the writers concede that the moral obligation they seek to establish should not be legally enforceable. Yes, they reject more radical proposals that would require all individuals to sacrifice their individual interests to promote the “greater good.” But still…
Three bioethicists–G. Owen Schaefer, Ezekiel J. Emanuel (Obama Chief of Staff Rahm Emanuael’s brother), and Alan Wertheimer, argue in the JAMA (“The Obligation to Participate in Biomedical Research,”July 1, 2009—Vol 302, No. 1) that we all have a moral “obligation” to “participate in biomedical research.” From the article (no link):
The obligation to participate in biomedical research makes reasonable demands on all individuals in a society. Participating in research is much less burdensome than contributing to many other public goods; joining the army is more risky and time-consuming than any clinical trial that has been approved by a well-functioning institutional review board. Indeed, paying taxes may be much more burdensome than participating in many research trials…
The standard view of research participation must be changed from one in which participation is supererogatory to one in which individuals need to give a good reason not to participate. The shift should be from participation in biomedical research being, like charity, above the call of duty, to such participation being a moral obligation for everyone to do his or her part.
But joining the military is not considered a universal obligation, which is one reason why our current military is so admired. Moreover, paying taxes does not risk your life and health. And somehow I doubt this moral obligation would fall on the elites.
Those points aside, as I said, the article gave me the willies. First, it is totally in keeping with the meme that eliminating suffering is the overriding purpose of society, which, as I have written and stated in speeches, can lead to many dark places. Moreover, it seems part of the growing utilitarianism in bioethics that is creating a duty to die through Futile Care Theory and health care rationing, and which seems to be leaving its primary emphasis on autonomy and moving toward what could become a dangerous collectivism.
Let me reemphasize: I am not accusing these writers of wanting totalitarianism. But I have read too much bioethical literature–calls for using PVS patients in xenotransplant experiments, advocating fetal farming and paying women to abort, promoting infanticide, etc.–not to worry where this “obligation” could lead. Remember “negative eugenics”–under which many states passed laws allowing the “unfit” to be involuntarily sterilization–was preceded by the seemingly more benign “positive eugenics,” the argument that the eugenically correct had a moral obligation to mate and procreate bounteously. In other words, once the moral obligation to improve the human gene pool became accepted among the elites, voluntariness for the great unwashed soon was lost in the shuffle.
July 13th, 2009 | 10:04 pm
Well, really, of course I have an obligation to take medication that might kill me…it’s my duty to society, after all. So what if I drop dead and my family is destroyed? It’s all for the good of science, didn’t you know.
July 14th, 2009 | 8:07 am
There is a whiff of Dr. Mengele in the air…
July 14th, 2009 | 8:40 am
Exceedingly creepy. And if they aren’t advocating coercion then one wonders exactly what the cash value is of this new approach. Is the idea simply that doctors are supposed to guilt-trip people about it, or what? Guilt-inducing billboards, perhaps? (“Someone needs your help. Join a medical experiment today.”) Somehow, I have a feeling the ethicists themselves are not simply going to volunteer as a sign of their new paradigm and leave all the rest of us alone.
July 14th, 2009 | 9:28 am
This is absolutely outrageous. My only moral obligation is to God, not some scientists who have questionable ethics, or who want a warm body to poke and prod for their joy of “research.”
Unfortunately, I could see the Obama admin reading this and creating an executive order demanding all Americans participate – or pay a heft fine.
July 14th, 2009 | 9:35 am
This is all a bit panicky. First, a “moral obligation” is pretty fluffy, and certainly is not a legal obligation. Nobody’s going to force anybody to risk their life.
Volunteering for biomedical research is a public service. I have done it, so has my wife, and my children have done non-invasive studies. We were fully informed of risks, and if there was inconvenience or distress involved, we were compensated.
Those were pretty low-risk studies, of course. Higher risk studies generally involve higher compensation, or they address a condition the subject has that hasn’t been treated successfully with existing options. Again, still voluntary, and requiring informed consent.
One concern that the authors may have had was that it’s getting tougher to get Americans to sign up for studies. This has led to many studies being run overseas in less affluent areas, Eastern Europe in particular. It creates problems both of ethics and of study validity. I know Wes has addressed this general area as a form of biological imperialism.
So, what I believe they’re trying to do is to recognize the social good that study volunteers do as a way of improving recruitment. In no way shape or form do I take that as compelling or promoting involuntary participation.
July 14th, 2009 | 1:31 pm
Well Padgraig, it usually does start out that way. In Congress, the previously “moral obligation” to voluntarily buy health insurance — you know, for the common good, which is so often conveniently aligned with the federal government’s fundraising schemes — seems to stand an actual chance of becoming a legal obligation now. Nevermind that those premiums aren’t coming back if I don’t use it.
If the legislation goes into effect, I have half a mind to dump my coverage, go to the nearest news station, and announce that I will send Congress a bill for $1,000 plus interest for every year I am healthy (which is likely to be for a while!).
July 14th, 2009 | 7:44 pm
Soon our bodies will belong to the state, not to ourselves, not to God.
July 15th, 2009 | 6:19 pm
It may not end up being mandatory, but, in the future, patients may face unpleasant choices – either participate, or wait for health care for a few years.
July 16th, 2009 | 8:03 am
No, I have no moral obligation to allow myself to be experimented on. Nor have I a moral obligation to keep living under any circumstances. I’m glad you’re beginning to see the case for human autonomy, and not just for “human exceptionalism.”
August 2nd, 2009 | 12:38 am
[...] From the Secondhand Smoke article: Just when you thought that the high advisers to President Obama couldn’t get any more radical. Consider: Cass Sunstein, his nominated regulations czar, wants animals to be able to sue their owners and has asserted that the lives of elderly people should be given less value in government regulatory cost/benefit determinations. Ezekiel Emanuel, a high health care adviser, wants to ration health care based on quality of life (and perhaps against the elderly) and has asserted we all have a moral obligation to be experimented on. [...]
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