Governing the risks emerging from the non-medical uses of genetic testing

Abstract

This paper investigates the risks and benefits associated with the use of genetic testing by agents outside the boundaries of the medical sphere and for reasons other than providing health care. Section one considers the actual and potential use of genetic testing by employers, insurance companies, educators, immigration officials and law enforcement agencies. Section two identifies the common risks that arise from all these uses of genetic testing including the risk to genetic privacy and confidentiality, the risk of genetic discrimination, the risk of creating a social polarisation between the genetically advantaged and genetically disadvantaged and the risk of creating a genetic surveillance society. This discussion on the common risks associated with genetic testing is imbricated with a number of policy recommendations that may assist in maximising the benefits and minimising the risks associated with the non-medical applications of genetic testing. In developing these recommendations, the aim is not to prohibit genetic testing and forego the many benefits testing offers individuals and society, but rather, to alleviate some of the fears and misunderstandings of gene technology and to create an environment in which genetic testing can be used to promote the interests of both individuals and societ