SoundRocket Collaboration Leads to Key Publication on Predispositional Genome Sequencing in Healthy Adults

An article just released today in Genome Medical, and available here to download in its entirety, reports on a groundbreaking study of over 650 individuals who have received whole genome sequencing as a predisposition screening tool.

The authors, who are all involved in the PeopleSeq Consortium, represent a collaboration between researchers at SoundRocketBrigham and Women's HospitalBoston University School of MedicineMiddlebury CollegeIcahn School of Medicine at Mount SinaiIllumina, Inc.; Geisinger National Precision HealthOpen Humans FoundationHarvard Medical SchoolUniversity of VermontBaylor College of MedicineUniversity College LondonMcGill UniversityThe Broad Institute; and Partners Healthcare Personalized Medicine

Tracking those who have received whole genome sequencing with pre-sequencing baseline surveys, followed by 3-month follow-ups has provided a window for how early adopters are using such tests.  The study examines their motivations (98% were curious about their genetic makeup), their concerns (57% had concerns about how predictive the test would actually be, and almost 48% were concerned about the privacy of the information), and how the results have had an impact on their behavior.  Approximately 8 months after receiving their results, only a little over 13% acted on the information provided with a healthcare provider, and less than 10% changed diet, exercise, or insurance coverage. And very few (under 3%) regretted the decision to have the test done.

SoundRocket assisted in the design and implementation of this study, and Scott Crawford of SoundRocket assisted in reviewing drafts of the article.