Consent and confidentiality in genetics: whose information is it anyway?

Abstract

Against a background of increasing regulation regarding access to medical information and the presentation of patients' confidentiality, the case of genetic information raises interesting questions about whether the application of general rules is appropriate in all situations. Whilst all genetic information is not equally sensitive, some of it is highly predictive. It also allows deductions to be made about other family members. It may not be regarded as particularly sensitive when compared to other types of medical information and those to whom it applies may not be as anxious about preserving their confidentiality as compared with—for example, the prospect of seeing research into cause and cures for rare diseases put in hand. These distinctions also find resonance with the general public. Resolving conflicting tensions will require subtlety, not a blunt “one size fits all” model.