Did you know that all human beings are 99.9% identical in their genetic makeup? The remaining 0.1% of your DNA can tell an important story – like why your hair is curly or straight, whether you love or hate the taste of cilantro, and your genetic ancestry and origins.
Most importantly, your DNA can offer clues on whether certain health conditions might run in your family or your personal risk for certain diseases.
Whether driven by curiosity or concern, a growing number of people are using DNA testing to learn about themselves. The National Institutes of Health’s All of Us Research Program offers people a way to participate in research while providing a way to learn about themselves, including what their DNA can tell them about their ancestry, traits and health.
Typical research studies enroll “subjects” who are studied by researchers. All of Us turns research into a two-way street. As a benefit of enrolling and privately sharing health data with researchers, All of Us offers participants an opportunity to access their genetic information and more.
Michael Miller, an All of Us participant ambassador, joined the research program because he wanted to ensure that African Americans were represented in this groundbreaking research initiative.
“The African American community has long been apprehensive of the research and medical establishment. That means we’ve been invisible to researchers and there is less information about how well different medical treatments work for us,” said Miller. “My goal is to change the negative perception of research in the Black community. It starts with me talking to my family, friends, neighbours, church members and co-workers to help ensure African Americans are included in health studies. These studies could help researchers understand health conditions that are more common in African Americans.”
The programme is working to sign up one million participants from across the country. Already more than 435,000 have joined and contributed data and samples. By sharing their data, participants like Miller are helping to build one of the largest, most diverse databases of its kind.
What’s the programme’s goal?
“By studying the unique genetic codes of people, and combining that with other types of data about our health, environment and life circumstances, researchers can look for patterns to better understand what affects people’s health,” said Stephanie Devaney, Ph.D., Chief Operating Officer of All of Us.
“But we don’t just take the data people donate without offering something in return. We’re designed to give personal health information to participants, so we’re sharing what we learn with those who are stepping up to support research that can benefit their family and community.”
Thousands of programme participants have already started receiving information about their genetic ancestry and personal traits, based on their DNA. In the next phases of the program, participants will have the opportunity to receive health-related results, such as their risk for certain diseases, or medications that might impact them differently, if they would like that information.
Participants like Miller take part in the program in different ways. Over time, there are opportunities to answer surveys on different topics, share their electronic health records and contribute blood, urine or saliva. The health information that participants share with All of Us goes into a secure database and is made available only to approved researchers.
“Our genes don’t predict our future. But our DNA can provide important information to share with our families and health care providers and inform the decisions we make,” said Devaney. “Our research program offers the double benefit of helping individuals learn about themselves and helping researchers improve health overall.”