Our final session: Genetics and Public Policy

The last in our genetics series—What is Fair? Genetics and Public Policy—was a great conclusion to what has hopefully been an exciting year of discussing important issues related to the intersection of genetic information with society. The evening started with an 18-minute clip from filmmaker Maria Finitzo’s recent documentary, “Mapping Stem Cell Research: Terra Incognita.’ ( A side note for those who want to see the film in its entirety—www.chicagofilmfestival.org). The film uses the story of Dr. Jack Kessler, chair of neurology at Northwestern University, and his daughter Allison, a paraplegic following a skiing accident at 15, to highlight the questions and challenges of stem cell research.

Next, we heard from Dr. Lanie Friedman Ross of the University of Chicago. Dr. Ross used a series of clinical cases to challenge us to think about the pros and cons of genetic testing from the perspective of individuals, their families, and their communities. As her first case illustrated, even something as technically simply as looking at a single marker of genetic ancestry can raise many complex questions. What if such information revealed a previously unknown connection to a racial/ethnic group that we didn’t know we had? Would you want to know? Or not? Would that change the way you viewed yourself? As one student said to Dr. Ross, “Maybe not, but I don’t want to find out!” These questions are even harder to answer when we look to issues of disease that affect whole populations. What is the best way to screen newborns for genetic diseases when initial testing options may or may not detect all of the mutations that can cause a given disease? Both Illinois and Tennessee will be introducing new measures for cystic fibrosis screening, and the two states have chosen different plans. What is our obligation as members of society to learn about how our state (and federal) leaders arrive at their public health decisions?

And finally, the evening concluded with Dr. Vanessa Worthington Gamble who used the history of sickle cell anemia and the more recent development of BiDil, the first FDA-approved drug targeted at a specific racial group, to discuss the way in which genetic and medical information is shaped by social and historical issues. And, as the discussion session at the conclusion of the presentation illustrated, at least some people feel that BiDil is not so much a racially-targeted drug as it is a racially-marketed drug. So what do you think? Is it a good idea to use genetics to further conceptions of race? If not, how do we move away from this paradigm?

Please join us to keep last night’s conversation going! When it comes to genetics and public policy, what is fair?

-Amanda
IHC facilitator