IDEAS IN ACTION

Genetics & Social Policy - STSC / HSOC 428

Term: Fall 2007

Instructor: Dr. Ruth Cowan

Distinguished Policymaker: The Honorable Joseph Sestak, US Representative, 7th District of Pennsylvania

Course Description: Since the mid-1960s, governmental jurisdictions of various kinds (public health departments, policing agencies, courts) have been acquiring and accumulating genetic information (through newborn screening and DNA fingerprinting). Since the early 1970s, physicians have been accumulating (through genetic testing) genetic information about patients; insurance companies and, sometimes, employers, have either had access to that information or have tried to collect it themselves. Since the mid-1990s, pharmaceutical companies and pharmaceutical researchers have been investigating the potential of “tailor-made drugs” or pharmacogenetics, which may necessitate that pharmacists retain genetic information about individuals in order to fill prescriptions for medication.

This course will focus on the policy implications of the collection of this genetic information, specifically with regard to legislation which regulates genetic privacy, or which requires and then regulates the collection of genetic databases, or which might regulate the testing and dispersion of individualized pharmaceuticals. Students will learn about the debates that preceded existing legislation (state, federal, international) on these subjects, about legal challenges either to the practices or to the legislation, as well as about the actual and projected impact of the legislation.