WASHINGTON — The nearly 200,000 Americans who have trusted federal scientists with their DNA, their medical records, and detailed behavioral surveys will soon begin to receive the results of a genetic analysis performed by the National Institutes of Health, the agency announced Wednesday.
The announcement marks a long-touted milestone for the NIH’s unprecedented “All of Us” precision medicine project. To date, researchers say, no government study has returned individualized genetic data to participants — especially one so large and diverse. The data will provide participants a deeper look into their own ancestry and genetic traits, their genetic predisposition to certain diseases, and, potentially, genetic factors that could impact the effectiveness of prescription drugs. NIH will also offer a more in-depth genetic counseling service to all study participants, and urge it for those who have a genetic factor that could impact their health care.
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I’m a health researcher and remain incredibly ambivalent about All Of Us, despite knowing many of the collaborators and watching its positive evolution over the last few years. My chief concerns: investing $1.6B over the life of the project, when we could use that money to shore up public health and prevention…which is chronically underfunded because it’s low profile and the benefits are less tangible and take longer to manifest.
Importantly, and I know the study team is attending to this, the persisting issue of low health literacy among the general public means that receipt of results must be very carefully communicated, and reiterated over time. The notion of “clinically actionable genetic results” is an opaque term for many, and the primary care clinicians who care for these patients may not have adequate support, resources, and preparation to address what patients discover through the course of their participation. I’m glad this will be mitigated to a degree by the genetic counselors, but the longer term availability of genetic counseling after contracts end is an open question at best, and at worst, leaves patients at sea without a navigator.
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How do people find out about these DNA tests?
Finally, a way to introduce medication treatment in an technologically/reasonably informed way. I am going to sign up today. Thanks to all the researchers who invisoned a better way to a healthier society.
How do you join?
Joinallofus.org