privacy
All of Us: Partnering Together for the Future of Precision Medicine
Posted on by Dr. Francis Collins
Over the past year, it’s been so inspiring to watch tens of thousands of people across the country selflessly step forward for vaccine trials and other research studies to combat COVID-19. And they are not alone. Many generous folks are volunteering to take part in other types of NIH-funded research that will improve health all across the spectrum, including the more than 360,000 who’ve already enrolled in the pioneering All of Us Research Program.
Now in its second year, All of Us is building a research community of 1 million participant partners to help us learn more about how genetics, environment, and lifestyle interact to influence disease and affect health. So far, more than 80 percent of participants who have completed all the initial enrollment steps are Black, Latino, rural, or from other communities historically underrepresented in biomedical research.
This community will build a diverse foundation for precision medicine, in which care is tailored to the individual, not the average patient as is now often the case. What’s also paradigm shifting about All of Us is its core value of sharing information back with participants about themselves. It is all done responsibly through each participant’s personal All of Us online account and with an emphasis on protecting privacy.
All of Us participants share their health information in many ways, such as taking part in surveys, offering access to their electronic health records, and providing biosamples (blood, urine, and/or saliva). In fact, researchers recently began genotyping and sequencing the DNA in some of those biosamples, and then returning results from analyses to participants who’ve indicated they’d like to receive such information. This first phase of genotyping DNA analysis will provide insights into their genetic ancestry and four traits, including bitter taste perception and tolerance for lactose.
Results of a second sequencing phase of DNA analysis will likely be ready in the coming year. These personalized reports will give interested participants information about how their bodies are likely to react to certain medications and about whether they face an increased risk of developing certain health conditions, such as some types of cancer or heart disease. To help participants better understand the results, they can make a phone appointment with a genetic counselor who is affiliated with the program.
This week, I had the pleasure of delivering the keynote address at the All of Us Virtual Face-to-Face. This lively meeting was attended by a consortium of more than 2,000 All of Us senior staff, program leads with participating healthcare provider organizations and federally qualified health centers, All of Us-supported researchers, community partners, and the all-important participant ambassadors.
If you are interested in becoming part of the All of Us community, I welcome you—there’s plenty of time to get involved! To learn more, just go to Join All of Us.
Links:
All of Us Research Program (NIH)
Join All of Us (NIH)
Celebrating Our Nation’s Birth and What It Means for All of Us
Posted on by Dr. Francis Collins
Happy Fourth of July! It’s the perfect time to fire up the grill, go watch some fireworks, and pay tribute to the vision of all who founded the United States of America. The Fourth of July also stands as a reminder of the many new opportunities that our nation and its people continue to pursue. One of the most exciting is NIH’s All of Us Research Program, which is on the way to enrolling 1 million or more Americans from all walks of life to create a resource that will accelerate biomedical breakthroughs and transform medicine.
What exactly do I mean by “transform?” Today, most medical care is “one-size-fits-all,” not tailored to the unique needs of each individual. In order to change that situation and realize the full promise of precision medicine, researchers need a lot more information about individual differences in lifestyle, environment, and biology. To help move precision medicine research forward, our nation needs people like you to come together through the All of Us program to share information about your health, habits, and what it’s like where you live. All of your information will be protected by clear privacy and security principles.
All of Us welcomes people from across our diverse land. Enrollment in the research program is open to all, and anyone over the age of 18 who is living in the United States can join. Since full enrollment began in May, three of every four volunteers have come from groups traditionally underrepresented in biomedical research. These include people from a multitude of races and ethnicities, as well as folks with disabilities and those who live in remote or rural communities.
So, as you celebrate the birth of the United States this Independence Day, I ask you also to look ahead to our nation’s future and what you can do to make it brighter. One way you can do that is to consider joining me and thousands of other Americans who’ve already signed up for All of Us. Together, we can build a resource that will revolutionize medicine for generations to come. Thanks, and have a safe and glorious Fourth of July!
Links:
All of Us (NIH)
Video: What is All of Us?
Video: All of Us: Importance of Diversity
Video: All of Us Launch
I Handed Over My Genetic Data to the NIH. Here’s Why You Should, Too (STAT)
NIH Support: NIH Office of the Director
Taking Control: Learn More About Accessing Your Health Information
Posted on by Dr. Francis Collins
Credit: Lydia Polimeni, NIH
Usually, I share cool science advances and major medical breakthroughs on this blog. But, today, I’d like to share something a little different, something of great importance for both your health and the advancement of biomedical research: new guidelines on how you can access your own health information.
The Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy Rule has long supported the right of individuals to request and obtain copies of their medical records and other health information maintained by health-care professionals, medical facilities, and health insurance plans. However, due to the increasing use of online health-information technology and growing interest among Americans in being active participants in health-related decisions, the U.S. Department of Health and Human Services (HHS) recently issued much-anticipated guidance that serves to answer common questions and clarify key issues regarding access to health information under HIPAA. Think of it as a valuable personal roadmap for navigating a part of health care that is all-too-often confusing and frustrating!
Among the many reasons that people need easy, affordable access to their health records is to empower them to take more control over decisions regarding their health. Such information can help individuals improve their ability to monitor chronic conditions, stick with treatment plans, track progress in wellness programs, and identify and correct erroneous information. In addition, some people may want such access so they can directly contribute their health information to biomedical research projects. One such endeavor is the new, NIH-led Precision Medicine Initiative Cohort, in which 1 million or more volunteers will agree to share data, including information from their health records. Maintaining the security and privacy of individual information will be of paramount importance. In return, participants will have the highest levels of access to their study results, along with summarized results from across the cohort.
HeLa Cells: A New Chapter in An Enduring Story
Posted on by Dr. Francis Collins
Caption: Multiphoton fluorescence image of HeLa cells stained with the actin binding toxin phalloidin (red), microtubules (cyan) and cell nuclei (blue). NIH-funded work at the National Center for Microscopy and Imaging Research. Credit: Tom Deerinck
One of the first things a biomedical researcher learns is that it’s very hard to grow most human cells in the lab for an extended period. In fact, once removed from the human body, most cells will either die immediately or reproduce only a limited number of times. That’s why it was so significant in 1951 that this barrier was overcome for the first time, using cancer cells taken from a 31 year old African American woman named Henrietta Lacks.
Blog Privacy & Comment Policy
Posted on by Dr. Francis Collins
Hello there—it’s been great hearing from so many of you! We’d like to remind everyone that this is a moderated blog that aims to encourage respectful, constructive dialogue. All viewpoints are welcome, but only comments that relate to the topic being discussed will be posted. We also retain the discretion to determine which comments violate our comment policy. For more information, go to http://directorsblog.nih.gov/privacy-comments/.
