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04/08/2010

The Presidential Commission: The Member Analysis

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The Presidential Commission for the Study of Bioethical Issues (PCSBI) had its membership announced yesterday–and frankly, I am apprehensive about the future of the commission.

After putting in 7 years hard labor in the study of bioethics commissions, I felt I should be able to make a guess at the composition of the new Presidential Bioethics Commission that was, at least, better than my guesses in the Penn/Stanford/Emory/Center for Practical Bioethics NCAA basketball pool. But honestly, I am even more boggled by the composition of this commission than that of the sweet sixteen basketball titans.

The composition of this commission is, again, from the perspective of someone who studies presidential bioethics commissions is befuddling. But not for the reasons one might think. The membership is highly qualified, of course. They represent a relatively even geographical spread nationwide (okay, 50% of the members are from the Boston/NY/DC corridor). The real issue I have (thus far) with this latest bioethics commission and its membership is the lack of clarity in the disciplinary representation as it regards the charter and how this effects what the commission is chartered to do.

For example, in the commission’s charter it clearly states:

“the Commission shall (1) identify and examine specific issues bioethical, legal, social issues related to the potential impacts of advances in biomedical and behavioral research, healthcare delivery, or other areas of science and technology”…..and (3) critically examine diverse perspectives and explore possibilities for useful international collaboration….”

I will argue that both (1) and (3) are likely to be difficult given the composition of this commission.

INSIDE THE BOX
The most obvious question one must ask when reading the membership list of the commission is, “Where are the bioethicists?” By even the most generous accounting you could count 3 (if you consider University of Pennsylvania’s Anita Allen a bioethicist for her affiliation to the Penn Center for Bioethics). Otherwise, there is are 2–Christine Grady from the NIH and Dan Sulmasy from the University of Chicago.

You don’t have to have commission chucked full of bioethicists to have a good bioethics commission. What you need to have, however, is some sense of what the commission is going to DO in conformity with the charter. From this line up, I’m left scratching my head.

The commission’s charter lists a range of potential scientific advances which include stem cell research, “neuro- and robotic sciences”, “genetic sequencing and biomarkers”, and it would seem that the membership is comprised of scholars whom fall neatly into each one of these categories with very little consideration as to whether the charter’s “including but not limited to” statement was to be taken literally or not. I think that you will see below that the appointments show rather little imagination but rather put the appointee’s into tidy little disciplinary boxes consistent with PCSBI’s charter.

ON TOPIC–BUT OFF MISSION?
So what will this bioethics commission do? If you read between the appointments you might be able to see a few clear starting points.

Neuroethics
Among the more theoretical members there is a law and philosophy scholar who could perhaps be called a “neuroethicist”, Nita Farahany, J.D, Ph.D.. Then there is a neuroscientist, Stephen Hauser, who edits a neuroscience journal and who locks in that one of the foci of this commission will be neuroscience and neuroethics.

Public Health Emergencies
Then there is the physician-public health member, Alexander Garza, MD who is also Chief Medical Officer for the Deparment of Homeland Security, which suggests that a whole range of issues yet to be addressed in bioethics could be brought up by such an appointment. But will they? I certainly hope so. Addressing the range of questions at stake in public health emergencies including questions of public health powers, federalism, funding issues, priority setting, rationing, and others is something long overdue at the federal level. If last years pandemic flu scare was any indication, ethics guidance is needed in this area.

Stem Cell Research
And then there is the “public member”. It’s Muhammed Ali’s wife, Lonnie Ali. Mrs. Ali is very knowledgeable about Parkinson’s Disease and is a knowledgeable and active advocate for that disorder. Is that a qualification for sitting on a presidential commission? Her nomination is obvious for a number of reasons. Mrs. Ali’s prominence herself made the nomination likely in addition to her Emory ties (she sits on the Emory Neurosciences Community Advisory Board). Perhaps having a semi-prominent figure sitting on a bioethics commission will result in a bioethics commission (for once) having public attention that its predecessors have lacked. But I doubt it.

em>Miscellany
Then there are the random other disciplines represented on the commission: genetics, HIV/AIDS, and cancer. The first two are hardly cutting edge. I would have been shocked if their had not been a genetics researcher on the commission. What is novel about the HIV/AIDS appointee to the commission is that Dr. Nelson Michael hails from Walter Reed and has worked on the development on the vaccine for HIV. Also, there is Barbara Atkinson, MD, from the University of Kansas Medical Center and Medical School, a place that is a leader in cancer research as well as a number of other disciplines.

What is disappointing about this list is that if nothing revolutionary happens in the world of scientific research over the next 3 years, then this commission will do fine. But history tells us this is unlikely to be the case. Moreover, this list of members really lacks creativity in terms of what a bioethics commission COULD have done. What about a systems biologist or nanomedicine researcher (in any one of the many disciplines of nanomedicine)?

THE FIRST EMPIRICAL BIOETHICS COMMISSION?
The commission’s charter clearly emphasizes the need for and authorizes the conduct of original empirical research to understand the problems the commission will face. Grady does empirical work in bioethics as does Sulmasy. This is clearly no accident. This is a change over previous bioethics commissions both in terms of their charter and their membership.

WILL ANYONE CARE ABOUT THIS COMMISSION?
The sector most likely to care about this commission are those who will criticize it. The most early and strident criticism will come from conservatives who will say that this commission lacks sufficient diversity. There are no Leon Kass acolytes on this commission. So, in one sense, they will not be wrong. This commission has been given the direct charge to engage with diverse perspectives, but also unlike other bioethics commissions that have come before it, they have not just religious scholars, but an actual clergy person. But despite Sulmasy’s being a Franciscan friar, I will wager that this appointment will do little to appease the strong and growing conservative faction within bioethics as well as the activists within the stem cell activism communities and others. Moreover, as far as liberals go, I think they find that Sulmasy is no neocon. So at least they will be pleased.

Moreover, unless this commission makes a concerted effort to reach out to the public and other international bioethics commissions (such as the Nuffield Council and others), it will fail in its third charge of critically examining diverse perspectives and reaching out worldwide.

However, in terms of overall impact, besides researchers like me, politicos, and the commission members families, unless another Dolly the sheep (or its equivalent) comes along, this commission is unlikely to have the impact upon the general public that the 9/11 Commission or the Warren Commission had. But here’s hoping.

If anyone were likely to know how to make it happen it would be its co-chair, Amy Guttmann (who in addition to being President of the University of Pennsylvania is a distinguished political philosopher and has written extensively about deliberative democracy). Commission impact is no easy task.

The massive attention that healthcare reform now has upon DHHS and the President (and the American public) is likely to result in very few paying attention to the work of a small band of 12 commissioners working on bioethical issues, no matter how important they might seem (to some of us).

But ultimately, the commission is now a reality and now that it has been empaneled and it is required by charter to meet 4 times a year, it is only a matter of time before its agenda is set.

I will be waiting to see what this commission holds for us…and whether my predictions are even in the ballpark.

Summer Johnson, PhD

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