Genetic information: Important but not “exceptional”

Abstract

Much legislation dealing with the uses of genetic information could be criticised for exceptionalising genetic information over other types of information personal to the individual. This paper contends that genetic exceptionalism clouds the issues, and precludes any real debate about the appropriate uses of genetic information. An alternative to “genetically exceptionalist” legislation is to “legislate for fairness”. This paper explores the “legislating for fairness” approach, and concludes that it demonstrates a fundamental misunderstanding of both how legislation is drafted, and how it is interpreted. The uncomfortable conclusion is this: policy-makers and legislators must address head-on the difficult policy questions concerning what should and should not be done with genetic information. Only by confronting this crucial issue will they achieve a workable legislative solution to the problems caused by genetic information.