The announcement yesterday that University of California, Berkeley was dropping its original idea of individually analysing genetic information from students joining one of their courses this coming year has been widely welcomed. Instead, “the test results will be presented in aggregate to students”.
It’s hard to imagine how those who dreamt up the idea balanced the risk/benefits of it but at least some degree of common sense has now been brought to bear on the issue. It does however point out a much bigger issue, which is that the oversight of personalised genetic testing is lagging far behind the technology. This was further highlighted last month by the publication of a research article and accompanying editorial in PLoS Genetics on the analysis of common traits derived from individuals who had submitted their DNA for testing to a commercial company. There was considerable debate around the oversight of this study and what protection such participants need. It appears that the regulatory framework is simply not in place to deal with testing in the context of such companies.
PLoS Medicine has previously published on a number of aspects of protection of participants in different circumstances including this one: Valid Consent for Genomic Epidemiology in Developing Countries . Those who oversee the processes of developing proper consent for personalised genetic data might do well to bear in mind one quote from that paper “Valid consent is a process rather than a simple one-off matter of signing a form.”