All of Us: Eric Dishman’s Story
Posted on by Dr. Francis Collins
At age 19, Eric Dishman was diagnosed with a rare form of kidney cancer. The prognosis: nine months to live. Thanks to early access to pioneering research in precision medicine, which clarified the best treatment plan for him, Eric is alive and well almost 25 years later. As you’ll learn in this video, Eric now directs NIH’s All of Us Research Program, which is enrolling 1 million or more Americans to build the foundation for the future of precision medicine.
If you’d like to volunteer for this landmark 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!
Can you detail how the NIH plans to review all of this data and how it will be protected? And why wouldn’t the NIH start like they did in the UK with looking at specific disease areas. The NIH could also learn from ResearchKit were institutions couldn’t have anticipated so much data being submitted and having no way to review all of it to lead to meaningful reporting.
Thanks for your questions! The All of Us Research Program will serve as a broad data platform to support studies on many different health and disease topics, rather than a limited set of conditions. Because of the program’s commitment to open data and science, we’ll make the data broadly accessible to researchers of all kinds, including citizen scientists. It is up to the researchers who access the data to decide what they wish to study. As for our efforts to protect participant information, we take data security very seriously. We’ve engaged teams of experts to conduct security testing, to establish safeguards against the unintended release of data, and to set penalties for the unauthorized re-identification of participants. For more details, check out our FAQs: https://www.joinallofus.org/en/faq
I’ve been waiting for information about the “all of us” program before I decide to participate. I have my genome info. and there is nothing that should prevent me from participating after I get more information. And please stop sending feel good stories about the objective of this project because that I understand already.
Guess it is way too early to expect any results yet, but it would be nice for participants to get more updates on what is happening with the program.
For instance, how many of the 210,000 of us participated in the spit test?
Why did Dr Collins time magazine article not make a big pitch to get more volunteers to sign up for ” All of Us ” ??
Thanks for your comments, Walter. The Time article by Dr. Collins, https://time.com/5709207/medical-science-age-of-discovery/?utm_source=newsletter&utm_medium=email&utm_campaign=the-brief&utm_content=20191024&xid=newsletter-brief, actually does feature a live link to the website to sign up for All of Us, http://www.joinallofus.org. It is included where All of Us is mentioned for the first time.