All of Us: Importance of Diversity
Posted on by Dr. Francis Collins
Medical research hasn’t always fully represented our nation’s rich diversity. As the video above shows, NIH’s All of Us Research Program is committed to doing things differently by enrolling individuals of many different races, ethnicities, and walks of life. The more we know about what makes each person unique, the more customized health care can become.
Want to be part of this pioneering effort? Go to the All of Us website, click the “Join Now” button, and follow the three easy steps. First, create an account. It’s free and takes just a minute or two. Next, complete the enrollment and consent forms. That usually takes 30 minutes or less. Then, complete some baseline surveys and find out what to do next. Thank you!
Delighted to join & promote this important longitudinal research study. Thank you — in my children’s and grandchild’s name.
As a one time scientist at NIH is absolutely exciting for me.
I am intrigued by this project. However, I have not seen anything about how my personal information will be specifically used. I don’t see anything on what steps will be taken to prevent release of individual’s private information. I don’t see anything on specific steps being taken to protect my privacy and confidentiality. I would like to know under what conditions a researcher would be given access to the database, what repercussions will be faced for any breach, and whether or not a researcher can have ties to any commercial firms. I want to know absolutely that no insurance companies, drug makers, etc., will have access to my information. How will you ensure that I don’t start receiving ads for drugs, hospitals, insurance, etc., if I participate. I guess I just see way too many bad ways my data could be used and in today’s climate I need more certainty.
Great questions, Elizabeth! We have multiple safeguards in place to protect participants’ privacy. For example, participants’ information is stripped of personal identifiers (like name and address), encrypted, and stored on a secure platform with rigorous data access policies. Access to All of Us data is for research purposes only. Researchers of all kinds—from citizen scientists to investigators in academia or industry—will be able to request access to make discoveries. For more details, please check out our Frequently Asked Questions at https://www.joinallofus.org/en/faq. Thanks!
It’s tremendous to see that the NIH is now renewing its pledge to ensure that clinical research reflects diversity in its participants and its resulting data. As this initiative comes exactly a quarter-century following the NIH’s Revitalization Act of 1993— which specified a mandate for the inclusion of women and minorities in clinical research funded by federal monies— and since then the mandate has never possessed any “teeth” of enforcement nor instituted any repercussions for researchers violating this rule, it would be wonderful to have an understanding of how these measures will interplay, and what real consequences investigators and their institutions will now face for lack of compliance. Where are we now? How will this work?
Allison, thanks for your comment and questions. We agree that diversity in research is essential; there’s so much we have yet to learn about health disparities and how people’s individual differences affect health and disease. Inclusion has been at the forefront of our plans with the All of Us Research Program, which will serve as a data platform for thousands of studies and engage diverse communities that have been left behind in the past. We take a broad view of diversity, including racial and ethnic minorities as well as other groups that have been historically underrepresented in research. That includes sexual and gender minorities, seniors and children, residents of rural and non-metro areas, people with low income or low educational attainment, people with limited access to health care, and people with disabilities. The program is working to enroll at least 1 million participants who stay engaged over many years and complete all of the program’s main activities, including providing physical measurements and blood and urine samples. Of the 1 million, we’re aiming to have 70-75% come from these underrepresented communities so the group is diverse demographically, geographically, and medically. We’ve reached this target with our initial community of beta testers, and will continue working hard to engage diverse communities going forward so that all stand to benefit from new scientific discoveries and health advances.
Talent, not racial and sexual quotas should determine who receives government support. “Diversity” is just a cover for PC bigotry and discrimination. We have come a long way from: “I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character.” Now skin color (and sex) are all that matters and bigotry (PC bigotry) is mandatory.