About a dozen states have enacted laws restricting health insurers' use of genetic test information, and a new federal law declares that asymptomatic genetic predisposition to illness does not constitute a pre-existing condition. This project will evaluate the effects of these laws in six states using a qualitative, comparative, case study methodology. Three states with laws restricting insurers' use of genetic information will be matched with three comparable states that lack these laws. This multiple case study will consist of a mix of qualitative and quantitative data sources and analytical methods: (1) structured, in-depth, open-ended interviews of key informants by expert interviewers; (2) participant observational studies of insurance agents; (3) content analysis of sales literature and news articles; and (4) statistical analyses of archival documents and secondary data. The primary interview subjects will be health insurers, insurance regulators, insurance agents, patient advocacy groups, and clinicians. The following are the major study questions: Do these state and federal laws increase coverage for genetically disadvantaged subscribers? Are there any signs of serious adverse selection caused by these laws? Do eligible patients use selected genetic tests or participate in genetic research more readily in states with these laws? How are these laws interpreted and implemented by agents/brokers? Have techniques arisen for circumventing these laws? The results of this investigation will be disseminated in peer-reviewed publications, in various presentations, and in a final report. These will inform lawmakers, purchasers, and the public policy community whether and how these laws have achieved their intended purposes or caused any negative consequences, and how these laws might be strengthened or improved.
| Hall, M A; Rich, S S (2000) Laws restricting health insurers' use of genetic information: impact on genetic discrimination. Am J Hum Genet 66:293-307 |
| Hall, M A; Rich, S S (2000) Patients' fear of genetic discrimination by health insurers: the impact of legal protections. Genet Med 2:214-21 |
| Hall, M A; Rich, S S (2000) Genetic privacy laws and patients' fear of discrimination by health insurers: the view from genetic counselors. J Law Med Ethics 28:245-57 |
