Racing to Personalized Medicine

A June 2011 report by Science Progress, a project sponsored by the Center for American Progress, provides policymakers with ethical guidelines to consider and discuss personalized medicine within its broader context. The report, Addressing Race and Genetics: Health Disparities in the Age of Personalized Medicine, recognizes the now decade long sequencing of the human genome as a fundamental factor in decreasing the costs associated with genomics testing. The report also references a Price Waterhouse Cooper report, which currently prices the personalized medicine industry as a $232 billion marketplace and projects it to increase at a rate of 11% annually. It is my assumption, that for the qualitative and quantitative values of personalized medicine to be realized by its respective stakeholders, most importantly patients, personalized medicine conversations will have to become increasingly prominent, not only within communities of academia, research, and healthcare influence, but within those potentially conducive hubs of local community politics: coffee shops, restaurants, beauty salons and barber shops, and churches.

As there are currently no ethical guidelines in place directly influencing the aforementioned commonplace community-level conversations, the successful personalized medicine discussion may have to be framed, at social media and mass communication levels, within the context of an educated, open, non-racially or ethnically charged or motivated, dialogue. Of course the framework for this working dialogue assumes U.S. citizens have the maturity to participate in meaningful conversations across the potentially perceived boundaries of race, ethnicity, class, and politics, respectively. In a society that, in some ways, continues to come to grips with its distinct racial and ethnically divided history, or its currently perceived racial-ethnic xenophobia, proponents and direct beneficiaries of personalized medicine may have to take an active role in not just framing discussions for appropriateness of using race or ethnicity for particular disease proxies, but race and/or ethnicity in general. In a society in which, according to the Federal Bureau of Investigation (FBI), there were 8,336 hate crime victims in 2009[i], of which 5,166, or nearly 61.9%, were related to race (4,057 hate crime victims, of these 71.5% were directed towards black people) and ethnicity (1,109 hate crime victims), healthcare influencers and policymakers should also be aware of plausibly loud pockets of resistance to any form of productive personalized medicine dialogue.

The Science Progress ethical guidelines[ii] for personalized medicine are as follows:

–         There must be a frank discussion of the social and methodological appropriateness of using race or ethnicity as disease proxies.

–         Genetic variation research and clinical trials must systematically incorporate such discussions into their individual study designs and the research itself.

–         We cannot ignore structural inequalities in access to health care and in fact should seek to reduce them through research that looks at social, environmental, and behavioral contributions to health status as well as research on the outcomes of different care delivery models for different populations.

Within this construct, personalized medicine must also consider and propose solutions to: (1) propose additional cultural competence training within medical societies and spheres of influence, (2) address the challenges in minority clinical trial recruitment, and (3) introduce and create personalized medicine dialogue at community levels– those coffee shops, churches, and establishments within communities of color.

[i] FBI Hate Crime Statistics, 2009, November 2010.

[ii] Science Progress, Addressing Race and Genetics: Health Disparities in the Age of Personalized Medicine, Michael J. Rugnetta and Khusboo Desai. June 2011.

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