Category: Bioethics

The Whitehall Studies and Human Rights

ncounts Leave a comment

By Nathaniel Counts

Professor M. G. Marmot et al. conducted two studies, Whitehall I and Whitehall II, in which they studied morbidity and mortality in the British civil service sector in the 1960s and the 1980s.  British civil servants are under the same plan with the National Health Service, so the studies controlled for access to healthcare.  But what these famous studies found was that morbidity and mortality still correlated with income.  Further research and analysis has concluded that it is job satisfaction and social status more so than income that determines health outcomes.  Does an individual feel like she has control over the work she does?  Is she stressed out a lot?  How does she feel about herself in relationship to those around her?  Does she feel healthy?  Does she like her life?  Those who feel in control of their lives, feel valued by society, and feel good about their health actually end up living longer and healthier lives on average compared to those who don’t share these beliefs.

Deep structural inequalities exist in every society, and social justice groups work toward greater social equality everywhere.  Does the notion that social inequalities are hurting people in a physiological way change the way we feel about the mission of equality?  Is health so fundamentally different that individuals who accept economic inequality might mobilize over health inequality?  It is certainly implicated in the right to a dignified life, a concept underpinning the human rights movement as whole.  It may be though that the social inequalities on their own terms are an equal evil, because the limitations on one’s abilities to pursue her interests are as inimical to human rights as worse health.

Read More

“Brains on Trial”: Research on Groups & Concern for Individuals

mbaum 2 Comments

By Matthew L Baum

What are the implications of advances in brain science for the justice system? This was the topic of a panel discussion held Tuesday at MIT’s McGovern Institute and moderated by Alan Alda in conjunction with the premier of his new PBS special, “Brains on Trial”. The  discussion ranged from using fMRI for lie-detection to using it to help determine the reliability of an eye-witness.

In general, the panel rightly pointed out practical limitations of these technologies. Panelist Nancy Kanwisher highlighted, for example, that research on lie-detection is done in a controlled, non-threatening environment from which we may be unable to generalize to criminal courts where the stakes are high.

While I was sympathetic to most of this discussion, I was puzzled by one point that the panel raised several times: the problematic nature of applying data based on a group of people to say something about an individual (e.g., this particular defendant). To present a simplified example: even if we could rigorously show a measurable difference in brain activity between a group of people who told a lie in the imager and a group of people who told the truth, we cannot conclude that an individual is lying if he shows an activity pattern similar to the liars. Since the justice system makes decisions on individuals, therefore, use of group data is problematic.

To me, this categorical objection to group data seems a bit odd, and this is why: I can’t see how group data is conceptually different from ordinary circumstantial evidence. Read More

An Apple A Day . . . the Doctor’s Prescriptions Say?

The Petrie-Flom Center Staff Leave a comment

As public health concerns over obesity and diabetes continue to rise, physicians, public health organizations, and medical educators are thinking out of the box — and into the kitchen and grocery store.  Two stories done by NPR this week feature programs aimed to increase physician influence in patient dietary choices.  The first article describes Wholesome Wave, a program in which a physician writes a “prescription” for fruits and vegetables in the form of a voucher for overweight or diabetic children (and their families).  The second article reports on a collaboration between Tulane University School of Medicine and Johnson & Wales University College of Culinary Arts.  The hope for the two schools is for both groups of students to learn more about nutrition.

Hearing these two stories reminded me of work I did as a student at the Harvard Legal Services Center, working with the Mississippi Food Policy Council to get food stamps accepted at farmers’ markets and improve access to fruits and vegetables.  Most would agree (including Michelle Obama) that providing access to fruits and vegetables in “food deserts” is a laudable goal, but I’m struck by the way in which “prescriptions” for healthy foods versus providing access to healthy food changes the level of autonomy patients have in choosing what they eat.

Couple programs like Wholesome Wave with the ACA’s increased incentives for wellness programs, and I wonder how much a doctor, employer, or insurance plan may dictate consuming that one apple (or bunch of kale) per day.  As Professor Matt Lamkin described in his work last year, some employer insurance plans contain high deductibles ($4,400 in the example he describes) that are much lower ($400) if a wellness plan is followed, which often includes following a doctor’s recommendations.  In the example Lamkin uses, a patient must choose between continuing unpleasant chemotherapy or paying thousands dollars more to satisfy the obligations of a higher deductible.  What if patients want to toss out a doctor’s “prescription” for kale and grab a KitKat instead?

While combating obesity and diabetes is of tantamount importance, how much outside influence over what we eat (or what our children eat) is too much influence?   I’m not sure where I come down on this issue, but it gives those of us simultaneously concerned with public health and patient autonomy something to chew on . . .

Upcoming Event: Larry Temkin speaking on “Global Poverty: Why Should We Care?”

The Petrie-Flom Center Staff Leave a comment

Want to know more about the ethics of aid? Want to hear the inspiring talk that’s convinced students across the northeast to take global poverty seriously? Join Harvard High-Impact Philanthropy for our first talk of the semester with ethicist Larry Temkin! RSVP here for

Global Poverty: Why Should We Care?

a talk by Larry Temkin

 Thursday, September 12

8 PM

Science Center E 

Each year, millions of children die from readily preventable causes. This raises an obvious and poignant question. What, if anything, should our reaction be to the apparent fact that each one of us could easily prevent the deaths of many innocent people who are not responsible for their unfortunate plight?

Larry Temkin is a professor of philosophy at Rutgers. He holds a Ph.D. from Princeton and is the author of “Rethinking the Good: Moral Ideals and the Nature of Practical Reasoning” (OUP, 2012) and “Inequality” (OUP, 1993). He has received seven fellowships and eight major teaching awards.

The lecture will take place in Harvard’s Science Center, Hall E (in the basement), and will be followed by a Q&A period.

This lecture is also the kick-off event for our Philanthropy Fellowship, a new program this year. Fellows will attend talks and private dinners/receptions with many speakers on effective altruism, including Princeton ethicist Peter Singer, Skype co-founder Jaan Tallinn, and cosmologist Max Tegmark. At the end, we’ll pick a cause that we think is important and raise funds for it ourselves, to be matched by an anonymous donor. To apply, fill out this short application by Sunday, Sep. 15!

Coupling Genetic Counseling to Test Coverage

michaelyoung Leave a comment

By Michael Young

As debates surrounding genetic patent rights begin to settle, new questions and disputes have started to emerge around insurance coverage for genetic testing.  For the first time, a U.S. health insurance provider (Cigna) has decided to require evaluation by an American Board of Medical Genetics or American Board of Genetic Counseling certified counselor before covering the costs of genetic testing, including genetic tests for susceptibility to breast and ovarian cancer (e.g., BRCA1 and BRCA2).  Cigna specifies in its new coverage policy statement, which goes into effect on September 15, 2013, that coverage for such testing will require recommendation by a certified genetic counselor based on pre-test individual evaluation, pedigree analysis, and intent to engage in post-test counseling.

By mandating genetic counseling prior to testing, this requirement aims to reduce unnecessary tests and to increase the efficiency and efficacy of health risk management and service delivery. Earlier this week, however, the American Society of Clinical Oncology (ASCO) took aim at Cigna’s policy, claiming that it can “negatively impact the care of cancer patients by serving as a barrier to the appropriate use of genetic testing services.”  At least four key considerations appear to underpin ASCO’s apprehensions about Cigna’s new policy.

Read More

Anonymity is Not Privacy (and Why it Matters)

jskopek 1 Comment

Anonymity is not just an aspect of privacy and recognizing their difference reveals a powerful and poorly understood set of legal tools for facilitating and controlling the production of public goods.  This is the central claim of my newest article (SSRN draft available here).

Three examples illustrate the scope of the under-explored ways in which anonymity is currently used in our law.

  • The first is from June 1997, when many residents in the Boston neighborhood of Allston learned to their anger that Harvard University had spent the previous 8 years secretly acquiring over 50 acres of Allston real estate.  It did so using buying agents, which can generally protect their principal’s anonymity—even by falsely stating that they are not agents.
  • The second is from Election Day 2012, when many voters who had shared photos of their completed ballots on Facebook and Twitter learned, to their surprise, that they had violated their states’ elections laws in doing so.   They did not know that anonymity in voting was not just a right, but also a requirement.
  • The third is from a 2006 lawsuit over the control of thousands of tissue samples being used in research at Washington University.  When many of the research participants sought to withdraw their tissue from future research, in response to what they saw as a breach of their consent, they were shocked to learn that the university could refuse and extinguish their rights of withdrawal by anonymizing their tissue samples.

These varied uses of anonymity in our law—as a right when purchasing land, a requirement in voting, and a trigger than extinguishes rights in biomedical research—may appear to be unrelated.  But I argue that they are in fact all part of a cohesive and previously unrecognized class of rules that use anonymity not to protect privacy, but rather to incentivize or control the production and circulation of information and other socially desirable goods. Read More

Experiment vs. innovative treatment in bacterial transplants

W. Nicholson Price Leave a comment

By Nicholson Price

There’s a fascinating and tragic story coming to its conclusion at UC Davis, which points at the fine line between clinical innovation and experimental treatment.  Two neurosurgeons just resigned, following the resignation of the med school’s dean last year.  The neurosurgeons, going off anecdotal evidence that some patients with deadly glioblastomas lived significantly longer when they accidentally acquired post-surgery infections, had deliberately infected three patients with live Enterobacter aerogenes, a bowel bacterium, and withheld antibiotics.  All three patients died, two of untreated sepsis.  It seems quite clear that the doctors were trying to do their best to help the patients; but they also appear to have circumvented procedures and rules to do so.  The consent form was only 300 words, though it included language that “[t]here is no proof that such treatment (for brain cancer) might be beneficial, nor are there animal data to support it” and that resulting harms might include “paralysis, inability to speak or understand speech, inability to swallow, vegetative state, coma or death.”  The Sacramento Bee has an excellent series of articles here.

One does wonder: if it had worked, would the reaction have been the same, or would the surgeons have been hailed as innovators and heroes?  Read More