I graduated last year from Portland State University (Oregon) with a double major in History and Philosophy and a certificate in Biomedical ethics. I am currently enrolled in a three-week course in public health genomics as a part of a Public Health Summer Institute at the University of Minnesota. Even with that academic background, a limited medical background from the patient side, and a limited (yet) informed exposure to genetics in a senior capstone class I took last year at PSU, "Democracy, Ethics, and Civic Discourse in the Gene Age," I was completely overwhelmed by the scientific content and language of a recent presentation on Pharmacogenomics (the general study of all of the many different genes that determine drug behavior, that is, an attempt to understand not only the molecular composition of genetic variants (SNPs) but also the behavior of those variants, including how those genes affect drug receptor sites.
As I struggled to process the information, I could not help but wonder how, upon hearing this presentation, the scientifically naive lay person would react to being asked to contribute their tissue (blood, skin, etc.) to clinical research studies (i.e. personalized medicine), one of the dreams of Pharmacogenomics research in the future. Even more importantly, how likely is it that patients suffering from adverse drug reactions (ADR) in this country (the 4th leading cause of death in the U.S.) would comprehend the information they need to make educated treatment decisions based on Pharmacogenomic testing? Not very likely, I would guess.
What can we do to make that possible?
In my opinion, what is critically needed in this country is a public consultation process designed to educate and engage a broad spectrum of prospective patients, along with our health care providers, researchers and policy makers, in a constructive dialogue about the potential benefits, risks and limitations of Pharmacogenomic technologies. Ordinary citizens should not need to be scientists to understand the importance of Pharmacogenomics, or any of the other new genetic technologies, to be part of the conversation about how we want to use these technologies for the common good.
We need to build a new public consultation process designed to link the public voice with the policy process, one that is rooted in values of the public and contains the accepted measurements of good public policy (fairness, justice, equality, freedom, opportunity, etc.). This approach would require that the public, as a stakeholder, weighs the risks and benefits of the application of a given technology, and experts evalute the relative likelihood that a given technology will deliver on its promises.
A clear understandig of this distinction could enhance the quality of publi input to public policy decision-making and counter the objections that are so frequently raised by federal advisory committees to public consultation strategies beyond those in which the experts educate the representatives of the public and then representative of the public evaluate the policy alternatives.
While "education" alone is clearly an important part of any publi consultation strategy, enacting social responsibility in a democracy requires more than education alone. It calls for clear assertion of community values that are likely to have an impact on policy options.
In her new book, Designs on Nature: Science and Democracy in Europe and the United States, Shelia Jasanoff writes:
"Given the profundity of the challenges thus brought into public and policy debates, democractic theory in the era of the knowledge society must take on board the involvement of citizens in the production, use and interpretation of knowledge for public purposes."