Dr Teresa Finlay and Dr Andelka Phillips carried out their doctoral research while associated with HeLEX. They both looked at aspects of 'Direct-to-consumer genetic testing' (DTCGT).
Teresa researched UK users’ and clinicians’ experiences of DTCGT. The project’s aims were to establish users’ motivations for testing and their understanding of complex risk information, and to ascertain the possible implications for the NHS of the anticipated shift to a more commercialised basis for healthcare information that DTCGT appears to be pioneering. Using sociological theory to examine how society influences technology, participants’ experiences of DTCGT were analysed for both users’ and genetics clinicians’ respective knowledge and experience in online genomics and the implications for personalised genomics.
Andelka’s research examined existing legal protection for the rights of consumers over their genomic sequence data in the context of DTCGT. It assessed whether current regulation is sufficient to meet the needs of consumers in this area, or whether reform is necessary. In considering the practices of DTCGT companies, the approach was to analyse the documented policies and the terms that DTCGT companies require consumers to enter into when ordering a genetic test. It also considered whether the law should apply different standards to DTCGT that is ostensibly conducted for health-related purposes and DTCGT that is primarily done for the purposes of “recreational genomics”. As part of this project, the applicability of existing law in the UK was examined in order to assess whether its scope could be extended to cover the advertising and marketing of DTCGT over the Internet.