A Tale of Two Polities

By Scott Burris

Last week, Northeastern University’s effort to convene a much-needed conference on the future of health policy was a casualty of the successful manhunt for the Boston Marathon bombers.  One hardly wants to make too much of a stymied conference given all the human damage of the bombing and its aftermath, but all of us who had gathered for the meeting regretted that we would not hear from the panelists, and sympathized with organizers who had put so much into planning it.  In recognition of that, I am summarizing here what I planned to say there.  It is a tale of two polities that seem to compete for existence in our perceptions of the politics of public health.

One public health is incredibly popular with citizens and lawmakers alike – demonstrated by polling and passage of legislation.  I’ve recently blogged on this here.  The other public health is the despised nanny state, big government, the sequestered and slashed-to-the bone struggling provider of essential services that don’t get no respect and don’t deserve the meager tax dollars we still pay in. We see this in budget cuts, in hyperbolic allegations of “corruption,” and in disingenuous advocacy for a radical caveat emptor regime for all legal products.

What do we make of these two radically different views of where public health now stands in the public’s regard? My claim is that the former is largely the truth – public health is popular, not despised – but the latter view is what is driving budgets and a lot of policy. The action points follow: a sustained fight to mobilize public support and win more battles over budgets and laws. I see three main strands of work:

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The Organ Conscription Trolley Problem

Yesterday, Glenn discussed paying people to donate nonessential organs while they are alive. I will argue that we ought to more aggressively incentivize organ donations from the recently deceased.

Imagine that an out-of-control trolley is heading toward an innocent person who is for some reason strapped to the trolley tracks. You happen to be standing near a switch that can divert the trolley to a different track and represents the only available means of saving the person. Here’s where this trolley problem gets much easier than others you’ve seen: If you divert the trolley, it will unavoidably crush the body of an already-deceased person who is strapped for some reason to the diversion track. Are you morally permitted to flip the switch to save a life when doing so will crush a deceased person? Clearly you are. Indeed, you are morally obligated to do so.

What if the family of the deceased is standing nearby and urges you not to, pleading that if their loved one’s remains are crushed, it will interfere with his religious preferences about burial? No matter how much it upsets the family and would have upset the deceased, you are  permitted to divert. Now what if diverting  would save not one life but six or seven? And what if the trolley wouldn’t crush the deceased beyond recognition but would merely cause some internal change that would be invisible at burial? Surely the answers only become easier.

If you’ve answered as I have, we should be permitted to take the organs from the recently deceased when doing so represents the only way of saving the six or more people who need those organs to survive. Does this mean we should implement a routine salvage program where people must donate if they die with organs available for transplantation? Not necessarily. There may be financial or priority incentives that will induce sufficent donation such that we don’t have to go so far as to conscript lifesaving organs. But our current practices cause far to much unnecessary death and misery. See here and here for more. [Originally posted at Prawfs]

Impact of the “Lander Brief” in the Myriad Case – and an answer to Justice Alito’s Question

 [Cross posted at Prawfsblawg.com]

The Supreme Court heard oral arguments on April 15 in Association of Molecular Pathology et al. v Myriad, concerning whether human genes are patent-eligible subject matter. The case focused on Myriad’s patents on two genes, BRCA1 and BRCA2, involved in early-onset breast cancer.

Surprisingly, many of the Court’s questions for Myriad’s counsel focused on what Justice Breyer dubbed the “Lander Brief” – an amicus filed on behalf of neither party by one of the country’s leading scientists, Dr. Eric Lander. (Lander was one of the leaders of the Human Genome Project and co-chair’s the Presidents Council of Advisors on Science and Technology.) [Full Disclosure: I am one of the authors of this brief.] Justices Breyer, Ginsburg and Alito referred to the brief by name, and several other Justices were clearly influenced by the information in the brief.

I believe that the “Lander brief” was a hot topic of conversation because the Justices realized that it was central to applying the Court’s product-of-nature doctrine to DNA. Importantly, the brief demolished the scientific foundation of the Federal Circuit decision on appeal. The Federal Circuit panel held that human chromosomes are not patent-eligible because they are products of nature, but a majority found that “isolated DNA” fragments of human chromosomes (such as pieces of the breast cancer genes) are patent-eligible. The Federal Circuit’s distinction rested on its assumption that (unlike whole chromosomes) isolated DNA fragments do not themselves occur in nature, but instead only exist by virtue of the hand of man. Read More

Post-doc/Instructor Positions in Medical Ethics at NYULMC

The Division of Medical Ethics at the NYU Langone medical Center seeks to recruit two persons either as post-docs or instructors.

Applicants must demonstrate an excellent record of quality scholarship and teaching, and must have a PhD, JD, or MD. Successful applicants will be expected to demonstrate a strong scholarly career track in a sub-field of medical ethics/bioethics. The Division is especially interested in persons with research interests in neuroethics, reproductive technologies and ethics, public health ethics, transplantation ethics and mental health ethics. Read More

Department of Social Science, Medicine & Health, King’s College London: POSTGRADUATE BURSARIES 2013-14

The Department of Social Science, Health & Medicine invites applications from candidates wishing to pursue Masters programmes, starting from September 2013:

MA BIOETHICS & SOCIETY

The MA in Bioethics & Society is a new postgraduate programme that is jointly taught with the Centre of Medical Law and Ethics at King’s. The programme gives particular emphasis to addressing bioethical questions in ways that integrate conceptual and normative analysis with empirical research. Students will also study the history and sociology of bioethics and have the opportunity to obtain training in empirical research methods.

https://www.kcl.ac.uk/sspp/departments/sshm/study/bas.aspx

MSc GLOBAL HEALTH & SOCIAL JUSTICE

This interdisciplinary and novel Master’s programme is designed to develop a new generation of thinkers and policy makers that have high level skills in the critical analysis of the social and political determinants of health and its inequalities in a global context as well as abilities to identify and provide normative arguments about the underlying ethical frameworks and conflicts.  The programme includes two core modules including Critical Global Health and Global Health Ethics as well as a dissertation.

https://www.kcl.ac.uk/sspp/departments/sshm/study/ghsj.aspx

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Transplant Tourism: Hard Questions Posed by the International and Illicit Market for Kidneys, New Article I Wrote

[Cross-Posted at Prawfsblawg]

The Journal of Law, Medicine, and Ethics has just published an article by me on transplant tourism, that discusses the burgeoning international market for buying and selling kidneys. I review the existing data from Pakistan, Bangladesh, and India, which is pretty deplorable. As I show the vast majority of these sellers are poor and using the money (which is a significnat sum in terms of what they earn, even though in the end only 2/3 is paid) to try to buy themselves out of bonded labor, pay off familial debts, or try to mount a dowry. Many are misinformed or decieved about the health consequences for them and the needs of the person who will receive their kidney. Once they have agreed to sell they are often pressured not to renege. They are often released too soon post-transplant compared to what is optimal for a transplant, and their self-reported health post-transplant is worse. Many experience significant social stigma as a “kidney man” (or woman)and the 20-inch scar (the more expensive way of doing the procedure would reduce the scar size) marks them for life and makes it difficult for them to marry. Most express significant regret and would advise others not to undertake the operation.

Despite these grave facts, as I argue in the paper (and in greater depth for many of these arguments in the chapter on transplant tourism in my new book on medical tourism under contract at Oxford University Press), many of the traditional justifications from the anti-commodification literature — arguments relating to corruption, crowding out, coercion, and exploitation — do not make a convincing case in favor of criminalization. If a ban is justified, I argue the strongest arguments are actually about defects in consent and justified paternalism, on the assumption that criminal prohibition is a second best regulation in the face of the impossibility of a more thoroughly regulated market.

I then examine what means might be used to try to crack down on the market if we concluded we should. I evaluate possibilities including extraterritorial criminalization, professional self-regulation, home country insurance reimbursement reform, international criminal law, and of course better organ retrieval in the patient’s home country.

I will keep writing on this topic, including for my new book, so even though this paper is done feel free to email me your thoughts.

While We Sleep?

By Scott Burris

Nothing threatens a know-nothing more than the prospect of someone knowing something. Hence there has been increasing pressure on and from some in Congress to reduce government funding of social science research.  I hope every reader of this blog is aware that an appropriations rider added by Tom Coburn has drastically restricted NSF funding of political science research. That’s an ugly development, on par with the scandalous cuts to CDC that put paid to its gun research agenda years ago.

But the big funder of social and behavioral research in health is the NIH. In the past two weeks, I have heard via two different insiders that the agency is under pressure to significantly cut back on social and behavioral research, at least research with any important links to public policy. Now it is true that NIH does far too little policy-relevant research as it stands, but many fine researchers do important work related to law and policy with NIH support, and the important influence of law on health means we need more, not fewer, NIH-supported careers.

So I am hoping I am getting false information. What are you hearing?

Call for Applications: Student Internship Program

The Petrie-Flom Center for Health Law Policy,
Biotechnology, and Bioethics at Harvard Law School
 
Call for Applications
Student Internship Program

 

The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School is seeking student interns for the upcoming academic year beginning in September 2013.   Full-year availability is preferred, but single-term internships will be considered on an individual basis; please indicate your preference in your application materials. We are not currently accepting applications for Summer 2013, but may consider extension through Summer 2014 if there is mutual interest.

Who is eligible?

Harvard undergraduate and graduate students with an interest in the Center’s work are eligible to apply. More information about the Center is available here. The internship is open to students in all disciplines, but we particularly welcome applications from students studying health policy, philosophy, bioethics, law, medicine, business economics, and the sciences.  We are also interested in receiving applications from students interested in technology and communications, as we plan to substantially update and expand our Internet presence and social media strategy.

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Organ Donation Euthanasia

ELPAT (Ethical, Legal and Psycho-social aspects of Transplantation) is a division of the European Society of Organ Transplantation (ESOT). During the last weekend, the third ELPAT Conference has been held in Rotterdam. It has been a fascinating meeting that has gathered a group of prestigious scholars from many countries around the world to debate several ethical and legal topics involved in transplantation. Glenn Cohen has been one of the key speakers, along with Robert Truog, Alex Capron, Jennifer Radcliffe Richards and many others.

One of the issues which has been hotly debated is “organ donation euthanasia”, a practice that is currently being developed, albeit still marginally, in Belgium, where, as you know, euthanasia is legal since 2002. The issue which intrigued me more is the possibility of adding those organs to the common European pool for their eventual transplantation in a patient from a country in which euthanasia is still forbidden. In a way, our reluctance to such scenario seems to be analogous to the use of organs from executed prisoners. There are even more perplexing alternatives. As is well known, many British citizens travel abroad in order to get euthanasia (Switzerland is the main destination but also The Netherlands and Belgium). Should they also become eligible donors, would it be possible for British citizens to receive the organs? How can we handle that with the allegedly criminal behavior of the travel companions of the “suicide tourist”?

Euthanasia is not permitted in the US, although some States have enacted “aid in dying” statutes. I was wondering, first, if it might be possible in those States to be an “aided in dying organ donor”. What happens if the person who is prescribed the lethal dose requests it? Is it possible to arrange things in such a way that that request is feasible and honored (maybe the individual ingests the pills in an ICU)? Secondly, what about the organs? Should they remain in the State in which aid in dying has been legalized? What do you think?