Gathering data for direct-to-consumer personal genomic testing made easier with SoundRocket as data collection partner

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Direct-to-consumer personal genomic testing is a growing trend, and Scott Crawford and the team at SoundRocket helped with data collection for an important research study and article.

Collaboration

This SoundRocket collaboration with researchers from Universities around the United States and Canada was the first to look at the human impacts of personal genetic testing services and they did it by partnering directly with genomic testing companies.

The need

The academic research team needed a 3rd party to help collect the data in a way that would ensure participation and maintain confidentiality.  It was unusual to have multiple commercial organizations in partnership with academia, where the scientists would maintain control over the results. The research team wanted to be sure all data was secure and confidential.

Soundrocket came to the rescue

Our involvement provided a triangulation where no single organization could see all the data, and in doing so we delivered, to the researchers, data that was confidential and anonymous.

Personal genomic testing is a new service area where most who use the service are online. In order to get quality data from online sources, Soundrocket built the survey and sample management system, and managed the study implementation over the course of over a year of data collection.

First of its kind

This was the first experience for any researchers to look closely at the impact of personal genetic testing reports - to see how users understood them and made use of the results they provide. Soundrocket was happy to play a role in this important research.

One article that resulted from this work can be purchased here, and was published in the Journal of Genetic Counseling in December 2017. “Utilization of Genetic Counseling after Direct-to-Consumer Genetic Testing: Findings from the Impact of Personal Genomics (PGen) Study.”

The study and article was lead by authors:

  • Diane R Koeller, Department of Human Genetics University of Michigan and Department of Health Behavior and Health Education University of Michigan School of Public Health, Ann Arbor, MI

  • Wendy R. Uhlmann, Department of Pathology and Molecular Medicine, McMaster University, Hamilton, Canada

  • Deanna Alexis Carere, Department of Pathology and Molecular Medicine, McMaster University, Hamilton, Canada

  • Robert C. Green, Department of Pathology and Molecular Medicine, McMaster University, Hamilton, Canada

  • J. Scott Roberts, Department of Health Behavior and Health Education University of Michigan School of Public Health, Ann Arbor, MI and Center for Bioethics and Social Sciences in Medicine, University of Michigan, Ann Arbor, MI

Article Abstract:

Direct-to-consumer personal genomic testing (DTC-PGT) results lead some individuals to seek genetic counseling (GC), but little is known about these consumers and why they seek GC services.

We analyzed survey data pre- and post-PGT from 1026 23andMe and Pathway Genomics customers. Participants were mostly white (91%), female (60%), and of high socioeconomic status (80% college educated, 43% household income of ≥$100,000).

After receiving PGT results, 43 participants (4%) made or planned to schedule an appointment with a genetic counselor; 390 (38%) would have used in-person GC had it been available. Compared to non-seekers, GC seekers were younger (mean age of 38 vs 46 years), more frequently had children <18 (26% vs 16%), and were more likely to report previous GC (37% vs 7%) and genetic testing (30% vs 15%).

In logistic regression analysis, seeking GC was associated with previous GC use (OR = 6.5, CI = 3.1–13.8), feeling motivated to pursue DTC-PGT for health reasons (OR = 4.3, CI = 1.8–10.1), fair or poor self-reported health (OR = 3.1, CI = 1.1–8.3), and self-reported uncertainty about the results (OR = 1.8, CI = 1.1–2.7).

These findings can help GC providers anticipate who might seek GC services and plan for clinical discussions of DTC-PGT results.

Acknowledgements: The Impact of Personal Genomics (PGen) Study was funded by a grant from the National Institutes of Health (NIH), National Human Genomic Research Institute (NHGRI) (R01-HG005092).

DRK was supported by the Jane Engelberg Memorial Fellowship from the National Society of Genetic Counselors. DAC is supported by a Michael G. DeGroote Postdoctoral Fellowship from McMaster University and a Canadian Institutes of Health Research Postdoctoral Fellowship.

Nonauthor members of the PGen Study team include the following: Sarah Kalia, Kurt Christensen, Harvard Medical School and Brigham and Women’s Hospital; Mick Couper, Brent Doil, Michele Gornick, Lan Le, Jenny Ostergren, University of Michigan School of Public Health; Joanna Mountain, 23andMe; Glenn Braunstein, Pathway Genomics; Scott Crawford, Sound Rocket; Adrienne Cupples, Clara Chen, Catharine Wang, Boston University; Sarah Gollust, University of Minnesota; Stacy Gray, City of Hope Comprehensive Cancer Center; Kimberly Kaphingst, University of Utah; Barbara Koenig, University of California-San Francisco; Lisa Lehmann, US Department of Veterans Affairs; and Richard Sharp, Mayo Clinic.

The authors also wish to acknowledge Margaret Helm, Caroline Weipert, and Erica Schonman for their assistance.

When academic and commercial partners come together to conduct research and gather confidential data, it pays to have a partner who is expert at building online survey and data acquisition tools.

Our Promise

Soundrocket ensures your data collection runs smoothly and is confidential and secure so your research team can accomplish its goals.  To learn more visit http://soundrocket.com/soundrocket-method to learn how we can help you too!