Participants in NIH’s All of Us research program can leverage the resource to better understand their genetic testing results.
The All of Us Research Program, part of NIH, has awarded a $4.6 million grant to Color, a health technology company, to launch the program’s nationwide genetic counseling resource.
With this funding, Color’s network of genetic counselors can help participants understand what the genomic testing results mean for their health and their families.
All of Us plans to sequence the genomes of one million participants from diverse communities across the US. The project is aiming to create the largest and most diverse health resource of its kind.
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“Returning results in a responsible way is integral to what All of Us stands for,” said All of Us Director Eric Dishman. “Participants are our partners in research, who may want to receive their own health data, including genomics. The genetic counseling resource will help our participants interpret and act upon their health information.”
Participants in All of Us share health information over time through surveys, EHRs, and other sources. Some individuals are also asked to contribute blood and urine samples for analysis. Researchers will use this data to learn more about how biology, behavior and environment impact health and wellness, which could result in innovative discoveries and more personalized care.
The program expects to provide several types of information to participants, including ancestry and trait data, drug-gene interactions, and genetic findings connected with high risk of certain diseases. This information could help patients work with their providers more effectively and make more informed decisions about prescription drugs.
The program will also provide participants with genetic findings tied to 59 genes associated with risk of specific diseases, like breast cancer or heart disease. All of Us will follow guidance from professional organizations such as the American College of Medical Genetics and Genomics and the Clinical Pharmacogenetics Implementation Consortium.
Color will provide genetic counseling sessions to all participants as health-related information is made available. For example, a small percentage of people may receive DNA results, such as a variation in the breast cancer gene BRCA1, which can be important to treatment or screening. This data could also be important to their immediate family members, who may share the same genetic variant.
Color will deliver these results to participants, who could amount to tens of thousands of individuals, and highlight any important findings in genetic counseling sessions.
Color will also offer educational materials and telecounseling in multiple languages, as well as access to in-house licensed clinical pharmacists, who will help patients have more effective conversations with their providers and connect patients to specialists who can address their health risks.
“A genetic counseling award of this size is a first for NIH,” said Brad Ozenberger, PhD, genomics program director of the All of Us Research Program. “We look forward to working with Color and our entire consortium to discover the ethical and effective ways to deliver genetic counseling at this very large scale across diverse communities.”
This award will add to Color’s involvement in All of Us. The company, together with the Broad Institute and Harvard’s Laboratory of Molecular Medicine, received one of three All of Us genome center awards in September 2018. These centers are tasked with generating genomic data from biosamples contributed by the program’s participants.
To help guide its genetic counseling services, Color’s steering committee will include leadership from the American Board of Genetic Counseling. The steering committee will help ensure that Color provides quality genetic counseling and serves as a platform for future genetic counselors.
“The All of Us Research Program is a prime example of using technology to support geographically distributed and diverse research volunteers. This ambitious program relies on a deeply unified process, which includes engaging participants, gathering health information, sequencing genomes, interpreting data and securely and responsibly returning results,” said Othman Laraki, chief executive officer of Color.
“We are honored to provide the technological backbone — software and services including our genetic counseling program — to extend the reach of this groundbreaking effort across all 50 states and showcase a scalable model for the integration of genomics into public health.”
- Tagged
- Genetic Testing
- Genomics
- Medical Research
- Personalized Medicine
- Precision Medicine
Date: August 27, 2019
Source: HealthITAnalytics