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Celebrating Our Nation’s Birth and What It Means for All of Us

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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:

Join All of Us

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

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Woman looking at electronic medical records on her smartphone

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

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Brightly colored cells

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

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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/.