Impact of HGP Derived Technology on Genetic Testing, Screening and Counseling: Cultural, Ethical, and Legal Issues

This project investigates the area of newborn genetic screening programs and policies governing state sponsorship of genetic screening. Legal aspects of confidentiality and informed consent will be analyzed in the context of genetic science and medicine. A detailed analysis of state-by state statutory schemes will be undertaken in order to identify potential discriminatory policies and mechanisms for protecting privacy and for obtaining informed consent. The study will include an analysis of situations in which a third party's right to know may prevail over individual privacy interests. Decision-making policies on how genetic conditions are entered into or excluded from a state's genetic screening program will also be studied. Minority populations access to and use of genetic medical and counseling services will be examined, including the nature of services available to rural populations. This project will examine the social and legal aspects of genetic counseling in terms of expertise and cultural sensitivity elements of counseling and the impact of counseling on medical practice liability. Initial phases of the research will study Florida and Georgia's policies and systems in depth. (Co-funded with DOE)