Alastair V Campbell

Title: What – if Anything – is Special about ‘Genetic Privacy’?

A general problem of privacy arises when technology delivers impressive powers of data capture, storage, processing and retrieval. Ubiquitous online networking, high-speed extraction and analysis of personal information at ever lower cost for use by individuals, corporations and governments have now made disclosure of personal information essential to individual participation in everyday life. Likewise, the progress of genomics requires statistically significant and representative data on human populations. The benefits of creating genetic databanks for various uses, such as the medical, genealogical, forensic and recreational, include economic growth and the development of commercial interests, advancement of science, promotion of public health and public safety. But proliferation of public and private sector genetic databases and genomic research worldwide is also widely perceived as a threat to individual and group privacy interests.

In this paper, we shall attempt to examine how expanded uses of genetic information do raise issues of privacy in a range of contexts, but we also suggest that some putative ‘special’ privacy claims arising from the availability of genetic knowledge are false, and do not warrant special ethical attention. Rather, the privacy of personal information is a central ethical requirement, crossing the boundary between genetic and non-genetic information sources.