The Genetic Discrimination Paradox

Debates about genetic discrimination generally assume that genetic discrimination is a prevalent phenomenon. (See here and here). I was recently collecting empirical studies for a case study on genetic discrimination and was extremely surprised at what the data revealed: Despite the growth in the number of available genetic tests, genetic discrimination remains rare (The case study is part of a larger paper available here).

It appears that the source of widespread public concerns about genetic discrimination was a series of first generation studies that were based on isolated case studies instead of survey methodology. Second generation studies remedied the methodological problems that inflicted the earlier studies. The overall picture derived from these newer studies reveals that genetic discrimination by insurers and employers is not only rare but also on the decline.

So why should we still be concerned? Although genetic discrimination is rare, individuals paradoxically are reluctant to submit to genetic testing. Individuals cite fear of genetic discrimination as a primary reason for not testing. Consequently, it appears that concerns about genetic discrimination are inhibiting the diffusion of genetic testing technology.

I believe these findings suggest a need to refocus our concerns regarding genetic discrimination. Calls have been sounded for years to supplement the existing patchwork of federal and state laws with a comprehensive federal law against genetic discrimination. These findings underscore the need for such a law, not primarily to deter genetic discrimination but to prevent the under-utilization of an important new technology by alleviating the public fears surrounding it.