My genome, my right

Book chapter
Change log
Cockbain, Julian 
Stercx, Sigrid 

The growing number of firms offering direct-to-consumer genetic testing (DTCGT) has prompted commentary from scientists, clinicians, bioethicists and ELSI scholars. Those critical of this nascent consumer industry have expressed concerns about, inter alia, the absence of evidence supporting the utility of DTCGT, the vulnerability of the public to misleading advertising claims, and the appropriateness of marketing tests direct-to-consumer. But even amongst those sceptics who believe that the business models of consumer genetics firms are as shaky as their scientific claims, there can be little doubt that one notable success they have enjoyed has been to shift the terms of public debate about genetic testing. In the face of a variety of efforts to regulate the consumer genetics industry, some firms (and some of their customers and supporters) have asserted the principle that individuals have a right to ‘their genome’. This assertion has proved extremely powerful, and its broad appeal requires us to pay it careful attention. What assumptions underpin the assertion of this genomic right? What might be its consequences? Should this putative right be seen as a legal right or a fundamental human right? What would be the implication of such a right for regulatory initiatives? What implications would it have for other forms of diagnostic testing? What other rights are invoked (implicitly or explicitly) in the policy debate about consumer genetics and what bearing do they have on any putative right to one’s genome?

Is Part Of
Personalised medicine, individual choice and the common good