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Future of medicine could be tailored to your individual genetics if data gathered is meaningful

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In the future, medicine will be tailored to your individual “genome” or genetic code, lifestyle and community. Rather than a one-size-fits-most treatment, doctors will use data to determine what therapies you should receive based on genetic traits you’ve inherited from family, your daily habits, and where you live.

But how do we get there?

{mosads}We need to understand how a person’s genome impacts their health outcomes. Everyone has a completely unique genome — the 3 million DNA pairs that determine their physical selves. This code influences your risk factors for inherited conditions and how you might respond to medication.


But health outcomes are not solely derived from one’s genome — lifestyle, environment and diet also matter. Now, researchers want to collect genomic information from one million Americans and overlay it with environmental, lifestyle and socio-economic factors, to better understand why some people get sick and others don’t.

To this end, the National Institutes of Health (NIH) is launching a first-of-its-kind longitudinal study, All of US, to gather biologic, lifestyle and environmental data on one million Americans across the United States.

They want to learn how different factors affect health care outcomes. They hope to create the genomic equivalent of the 20th century Framingham Heart study (where researchers have tracked the heart health of 5,209 patients for three generations) for the 21st century. Among other things, the Framingham study illustrated that cigarettes increase the risk of heart disease and helped lawmakers implement evidence-based policy that improved health.

In the same way, information from the All of Us study will be used to accelerate research and address longstanding gaps in scientific understanding. Currently, artificial intelligence and machine learning is deeply biased toward the data that happens to be available. Mostly that means payment records — which include what is billed for rather than health outcomes — and early genomic information, predominately from white men.

This study will work to eradicate those institutionalized biases by moving beyond payment data and tracking diverse people spread over the United States. Additionally, unlike commercially available genome tests, this study emphasizes that patients can take the data that is collected on them to their physicians, thereby providing personal benefits to the participants.

While anyone can send a DNA sample to 23andMe or and quickly receive an analysis of certain genetic features, the All of Us program will integrate genomic information with lifestyle and environment factors and track patients for years to come.

The hope is to gather more information on historically underrepresented groups in research, such as women and people of color. Then participants will also have a complete file on themselves — with all of their electronic health records (EHR) and biologic data all in one place. Researchers hope that this will also encourage additional EHR interoperability — where consumers and providers can easily share information across systems.

This announcement comes right after California officials admitted to using DNA-based genealogy screening to track down the Golden State Killer. This raised questions about what companies might do with personal genomic information and what researching one’s own DNA means for relatives. But the NIH does not sell personal information, like names, addresses, or other things that could identify participants. The samples — without identifying information — are stored in a secure biobank.

However, unless that data is meaningful for consumers, the study becomes simply a glorified biobank. So the study hopes to give participants actionable information that they can use to manage their own health better.

Genomic data can help participants choose lifestyles that reduce the risks of disease, understand their environmental risks, and get personalized treatments when they fall ill. For example, if a woman knows she has genes that make her more susceptible to breast cancer, she can avoid estrogen-heavy foods and medications throughout her life.

It’s clear that people are interested in this type of information and participating in this type of study — during its initial testing over the last two years, 25,000 people signed up. However, the government is now hoping that over one million will join and contribute data on their health and habits for the next 10 years.

To move medicine forward, we need more information on how to customize treatments based on genomic data, digital health records, information exchange between providers and patients, and a better understanding of how to mitigate the effects of lifestyle or environmental factors on a person’s health. Treatments should be tailored to the patient and overall, health care should improve the population health of a community.

While the All of Us study won’t accomplish everything on its own, it’s the first step to better integrate big data into health care. By having a better understanding of how biology, lifestyle and environment impacts health, we can then start to improve it.

Arielle Kane is the director of Health Policy at the Progressive Policy Institute. Her research focuses on what comes next for health policy in order to expand access, reduce costs and improve quality.

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