Cracking the Genetic Code: Genomic Science and Bioethics

Thanks, I suppose, to my friends Joshua Boger ’73 and Joe Fins ’82, I joined the board of the Hastings Center last year. At our last meeting, we saw a film that Hastings consulted on with PBS’s NOVA. It has to do with the tremendous advances in genomic science, and the ethical issues that have arisen as the clinical applications of the science become more accessible. Wesleyan’s strengths in science studies are really formidable, and some of those strengths fall into the bioethics category. The Science and Society Program, Feminist, Gender and Sexuality Studies, the Center for the Humanities, the Sociology, History and Philosophy departments are just some of the areas where one can find sophisticated work on bioethics at Wesleyan. And in throughout the life sciences at Wes, one can find advanced work that depends on genomics.

I put his up today on the Huffingtonpost.

On Wednesday, March 28th (9 p.m./8c), PBS will broadcast an important film that explores some of the crucial ethical issues that are emerging from the life sciences: how to use our knowledge of personal genetic information; and who should have access to this information about our individual and familial genetic data? On the one hand, genomic science promises us an unprecedented look at the material sources of our lives, and on the other hand, this science may tempt some to think that we are nothing more than our genetic makeup.

Cracking Your Genetic Code is a joint project of PBS’s NOVA producers and the Hastings Center, a bioethics research center on whose board I sit. The film gives an insightful and moving portrait of how people who suffer from genetic disorders are investing their hopes in genomic science. Designer drugs, like those to combat some forms of cystic fibrosis, are shown to have enormous potential for patients who can get access to them early enough to reverse the ravages of disease. In addition to the patients’ stories, we hear from scientists eager to use their understanding of the genetic bases of disease to prevent symptoms from emerging in future generations. Francis Collins, director of the National Institutes of Health, is particularly compelling as he describes the clinical potential of genomic medicine.

Cracking Your Genetic Code also describes the more troubling potential in our new understanding of our biological heritage. Will we want to know if our genes make it likely that we will develop a life threatening or debilitating disease? Will we want to tell our children, and, if so, when? Will the knowledge be helpful, or just a burden? Who else will know about our genetic destiny? Insurance companies? Advertising firms?

The Hastings Center’s Help With Hard Questions website provides a useful way of navigating in the new world opened up by contemporary genomic science. NOVA, too, has a website that complements the film. Both use social networking to bring together people concerned about what to do with the new knowledge that is available to us through science and technology.

It was not long ago that the goal of cracking the genetic code seemed like a wild ambition. Soon we will be able to get our own personalized genetic information almost anywhere for under $1000. The information tells us about our biological constitution; how will we relate that to our sense of self, family and destiny? Cracking Your Genetic Code raises more questions than it answers — perfectly appropriate as we strive to understand how to use and to protect these new modes of knowledge.

Here’s a clip from the film: