US researchers are leading a major project to examine the impact of direct-to-consumer personal genome sequencing
The Impact of Personal Genomics (PGen) Study, a major investigation into consumer genomics, is beginning data collection. 500 participants will be enrolled from each of two personal genomics companies, 23andMe and Pathway Genomics.
A collaboration between the companies and Brigham and Women's Hospital and the University of Michigan School of Public Health, the National Human Genome Research Institute (NHGRI) funded project will examine the attitudes, expectations and reactions of consumers to genetic tests that predict the future risks of disease, drug responses and disease carrier status.
Study leader Dr Robert C. Green explained that the project would provide evidence on the actual (as opposed to potential) benefits and harms of personal genomics services, saying: "The goal is to produce results that can be translated into recommendations to guide policy and practice in this rapidly emerging area".
Comment: This is not the first study to examine consumer genomics (see previous news), and will examine reactions only up to six months after testing as opposed to longer-term, but it is likely to provide welcome additional evidence to inform debate and decision-making on how useful or otherwise such services are. Of note, the project involves a laudable multi-disciplinary approach to design and execution, strengthening the likely value of results.