Friday, May 29, 2009


At this time in late May the jacarandas are in full bloom in my neighborhood. I love the rich color of the blossoms and the painterly carpet of lavender they lay down underneath the tree. I suspect the owners of the trees don't love them so well as I do when they have to clean up.

As the spring term winds down there is also less news in clinical research and ethics related topics this week. I did note one rather old item from a blog called Reason Online that discussed a case from the 90s about a woman who submitted a blood sample to be tested for the gene BCRA1, mutations of which can indicate high risk of breast and other cancers. If found positive, this survivor of one episode of breast cancer already planned to have her remaining breast removed as a preventative measure, and the problem arose when the physicians refused to give her the results, claiming such knowledge could be 'dangerous if revealed at the wrong time'. The patient claimed that by giving her blood sample she had entered into a kind of contract with the physician, including the connotation that she wanted the answer no matter what it was, and he was obligated to provide the result.

It turns out the physician was not just being recalcitrant or merely paternalistic. At the time of this incident in 1996, several prestigious bioethics boards including the University of Southern California's Pacific Center for Health Policy and the Law, Medicine, and Ethics Program at the Boston University Schools of Medicine and Public Health recommended that the BCRA1 test only be used in a research setting and the results not be provided to patients, the idea being that if there is no known prevention for a disease, what does it benefit the patient to know that they are more likely to get it? Happily, in the end the women received her test result which turned out to be negative.

Prestigious or not, the Mayo Clinic begged to differ with regard to prevention, publishing in the New England Journal of Medicine that year that prophylactic mastectomy before the appearance of breast cancer was about 90% effective in reducing the risk in moderate to high risk women. And leaving aside for a moment the question of prevention, is it really a valid view in a society that values individual responsibility and autonomy to withhold important medical information from a patient is who otherwise able to make her own decisions? The blog post goes on to review the evolution of bioethics in this country, tracing through the Tuskegee syphilis study and discussing the ethics of in vitro fertilization and other aspects of reproductive medicine.

And finally we have a picture from a gathering of some of my students who have just completed my course on clinical trials in emerging markets, taken in my living room last weekend. Some of them were being a bit goofy. Chalk it up to spring time.



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