Genomes2People Expands Partnership with SoundRocket to Improve Personal Genome Sequencing Outcomes

by | Feb 27, 2019 | Genetic Testing, News

After about seven years with SoundRocket, the Genomes2People Research Program in genomic sequencing has re-upped and expanded the partnership with the help of a new NIH grant for its PeopleSeq Consortium study. The Genomes2People Research Program (G2P) performs innovative empirical research to explore medical, behavioral, and economic impacts of using genomic information in society, specifically in medicine. G2P is conducted through the Brigham and Women’s Hospital, Harvard Medical School, and Broad Institute.

PeopleSeq Paving the Way

Underneath G2P, the Genome Sequencing Outcomes (PeopleSeq) Consortium explores the use of whole genomic sequencing on otherwise healthy adults. This study is the first ever to evaluate and monitor the behavioral, medical, and economic effects on early adopters as they receive, and then make use of, their results. Early outcomes of the study have already been released to the public.

Typically, as is the case with 23andMe and AncestryDNA, consumers use at-home genotyping kits to discover how their genes relate to their world ancestry or various other traits. Whole genome sequencing technology, however, could inform healthy individuals about rare genetic variants associated with increased risks of various conditions or diseases.

New Funding Expands PeopleSeq

The three year PeopleSeq study is led by Robert C. Green, a Professor of Medicine at Harvard Medical School, the Director of the G2P Research Program at Brigham and Women’s Hospital, and an Associate Member of the Broad Institute. Dr. Green has also led various other G2P studies, including the REVEAL Study, BabySeq Project, MedSeq Project, PGen Study, MilSeq Study, and won the Coriell Prize for Scientific Achievement in Personalized Medicine

Since becoming a part of the Harvard Medical School faculty eight years ago, Dr. Green’s G2P research team has been awarded over $35 million in research support. He recently led the PeopleSeq research team in successfully winning a $897,000 grant from the National Human Genome Research Institute, of the National Institutes of Health (NIH). With the early support of small private grants and this newer funding, the number of PeopleSeq study participants is predicted to triple its current size of 1,000 tracked individuals by the expected end date in June 2021.

SoundRocket Takes the Lead

SoundRocket will take the primary lead on respondent interactions/support, data collection, and data management. The study design consists of pre- and post- report disclosure surveys, followed by annual longitudinal surveys online. SoundRocket will provide questionnaire design and other survey methodological services.

Julie Smith will lead data collection, with Scott Crawford serving in a strategic development and survey methodology role. This study is an example of SoundRocket custom data collection services, with a crossover into FDA regulatory work.

SoundRocket also provides research consulting, and has extensive experience with standardized/syndicated studies, like the Multi-Institutional Study of Leadership and National Campus Climate Survey.

If your social science research study needs a touch of SoundRocket expertise, you can fill out this form and the team will be in touch.

Currently, the FDA only regulates true direct-to-consumer (DTC) genetic tests, which have no health care provider involved either before or after testing. Consumer-initiated, physician-mediated genetic tests are considered lab developed tests (LDTs), which currently do not require FDA oversight. 

 

Our Study Design

Our study was designed to simulate the experience of an everyday person who is considering doing a health-related genetic test. For this reason, we only reviewed website contents presented to a consumer before ordering a test. By limiting our data collection to pre-test content, instead of digging around or contacting the companies to fill in missing data points, gaps in public-facing information that consumers use to make ‘informed’ decisions were revealed.  

Also, while a genetic counselor supervised the project, a research assistant (RA) conducted most of the website investigations. The RA was familiar enough with genetics and genetic testing to understand and identify the information presented on the websites, but has not had the clinical exposure that might create bias from knowing how specific tests work “behind-the-scenes”. 

 

To Sum Up

We set out to understand the landscape of health-related consumer genomics testing from the public perspective. By limiting our research (by design) to public-facing pre-test website content, we could not complete our data collection as set out in the protocol. However, this uncovered an important observation: consumer genomics websites are highly variable in content, readability and ease of use. 

This begs the question, if we can’t find basic test information on a consumer genomics website, how does a consumer have enough information to make an informed choice about testing? 

Stay tuned for Part 2 in this series, where we will dig into our study findings and reveal our most interesting observations.  

 

 

As experts in FDA user comprehension studies for consumer genomics companies seeking 510(k) clearance, we are interested in how everyday people access and understand health content that is meant for them. If you need help optimizing your consumer-directed health communications, we’ve got the in-house expertise and experience to meet your needs. Let’s chat

About the Author

Scott D. Crawford

Scott D. Crawford is the Founder and Chief Vision Officer at SoundRocket. He is also often found practicing being a husband, father, entrepreneur, forever-learner, survey methodologist, science writer & advocate, and podcast lover. While he doesn’t believe in reincarnation, he’s certain he was a Great Dane (of the canine type) in a previous life.