Legal Issues in Genetic Discrimination

The purpose of this proposal is to analyze legal issues related to instances of genetic discrimination. The central hypothesis is that the existing legal framework may not remedy a number of reported problems experienced by individuals with genetic traits or conditions, particularly those involving insurance, and that new statutes or amendments of existing statutes must be considered to afford adequate protection against discrimination. This proposal has four specific aims: (1) define genetic discrimination in legally cognizable terms; (2) identify legal issues in reported cases of genetic discrimination; (3) analyze the existing legal and regulatory framework's ability to remedy instances of discrimination which have been reported and consider alternative approaches which will address these issues; and (4) develop a strategy for identifying previously unreported instances of genetic discrimination. Reports of possible discrimination will be obtained from three sources: (1) reports that Dr. P. Billings continues to receive in response to his prior survey; (2) responses received by Natowicz and Billings to questionnaires sent to approximately 68,000 persons possessing or at risk for certain gene disorders or who are asymptomatic carriers; (3) reports received from counselors and social workers affiliated with the State of California Genetic Disease Branch and the Northern California Sickle Cell Center. It is hoped that this study will pinpoint legal issues in reported cases of genetic discrimination and result in proposals directed at preventing the use of genetic information to discriminate.