Government wants your DNA. Don’t run
One of the U.S. government’s most intriguing health programs is going to start bearing fruit soon. And the more people who join, the better.
The National Institutes of Health’s “All of Us” project, launched last year, aims to collect genetic information from at least 1 million Americans and make it broadly available to researchers looking for medical breakthroughs. At least 230,000 people have enrolled in the free program, and 175,000 have contributed biologic samples.
It’s not just about blood and spit. The program collects health questionnaires, electronic records, Fitbit data, and physical measurements from people who opt in. And unlike other similar efforts, it’s committed to giving data back to recruits in a useful way. On Wednesday, the NIH announced a partnership with San Francisco Bay area startup Color, which will provide genetic counseling services for participants. Color will help people understand how genetic test results might affect their health, adding a tangible benefit on top of the initiative’s more abstract goals.
The NIH plans to incorporate health claims and even air-quality data, and will follow participants for at least a decade, making the program one of the most ambitious research projects ever attempted – some might even say intrusive. Yes, such a large-scale initiative raises significant privacy issues that will require strict safeguards. But the program’s long-term potential to improve health across a wide swath of the population, particularly those in marginalized groups and underserved areas, makes it an initiative worth rallying around.
The falling cost of genetic testing is already changing health care. Researchers have developed gene therapies that can alter the course of deadly diseases with a single treatment, as well as effective cancer drugs targeted at specific mutations. Consumer-oriented testing companies are offering genetic insights (of varying quality) into everything from dietary issues to vulnerability to disease.
So-called precision medicine that is informed by genetic data is still the exception rather than the rule, however, and there are considerable gaps in our knowledge. Like just about everything in health care, the benefits of these advances disproportionately flow to wealthy and well-insured Americans. The limited data that is broadly available to researchers isn’t diverse and is often divorced from crucial information on the many environmental and lifestyle factors that impact health.
The NIH program is a promising step forward. Underrepresented groups, including ethnic minorities, make up 80 percent of participants so far. The program will continue to target those groups, which will help make future research findings significantly more reliable and easier to generalize. And the more expansive genetic dataset, especially when connected to the variety of other information collected by the study, will help scientists ask and answer a wider range of questions.
While there are real privacy concerns related to the collection of genetic information, data security and privacy protection are a priority, and the data available to approved researchers will have identifying information removed. The scientists at the NIH are also likely to be better stewards than the various for-profit companies that are already selling the genetic data they are collecting.
The program will provide useful data and support to participants as soon as next year, when genetic testing of samples starts. Genetic counseling will be broadly available though the partnership with Color, and will be targeted at people with genetic variations that link to serious diseases. Counselors will help participants decipher results and determine possible next steps. The potentially lifesaving benefits of the service extend beyond participating individuals to family members who might have the same genetic variation.
The NIH estimates that 30,000 people will get actionable information about a serious condition and that more than 90 percent of participants will get useful facts on how well they might respond to certain medicines. The available insights are likely to become more valuable over time as we learn more, possibly as a result of this effort.
This program isn’t going to result in novel public health interventions or new drugs overnight. It may, however, make a difference in individual lives as soon as next year and will help many more in time. That’s why it deserves support – and yes, by that I mean with a vial of your blood.
Nisen is a Bloomberg umnist covering biotech, health care.
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