A GenomeWeb story today provides details of a study being performed by researchers at Brigham and Women’s Hospital and the University of Michigan on the motivations for getting and effects of DTC genomic testing. The study will look at the attitudes and motivations of 1000 people who order tests from 23 and Me or Pathway Genomics before testing. These results will be compared with the subjects’ attitudes toward their health and changes in their behaviors following testing to ascertain how people use genetic information.
Two interesting aspects to this study are the academic-industry collaboration and the window into social attitudes toward genetic information. The ability to complete this research will require the industry participants to cooperate, which in turn required give and take from both academia and industry to accommodate the needs of both parties during the planning process. These two groups are often at odds, so it is heartening to see a partnership that recognizes that both parties are motivated to make positive contributions to the greater health good. The road to this agreement is described in this paper by Lehmann and colleagues .
Clearly, the payoff for this study will be answers to questions around why people are interested in this type of testing anyway and what effect it has on their lives. A big concern from the health policy world has been that dispensing this type of information without expert interpretation might lead to a range of ill effects on the recipients. Happily, this so far has not been the case and for the most part I don’t believe ill effects will be observed in the future.
I am curious to see what the motivations for so-called “recreational” user are, if those can be identified in this study. Similarly, it will be interesting to infer from these results how seriously people take genetic information. My sense of it is that these results may reflect back in surprising ways on the usefulness of a variety of other genetic and genomic testing services, primarily involving the risks of disease. This study will hopefully provide a novel window into what we as a society really think of genomics.