In a world in which there seems to be a new hack every week that exposes personal data of million of people, it’s no surprise that the mass majority of us are wary about sharing certain aspects of ourselves with anyone. The National Institute of Health, however, is taking the opportunity to discuss how important it is to share our health data if we want to see future generations thrive and lead healthier lives.
Beginning Sunday, the NIH is asking one million people all over the country to join the program, called ‘All of Us‘, and share everything from their electronic health records to their genetic makeup in an effort to use the information to find out what makes us sick and what keeps us healthy – and how we’re all so vastly different. According to the NIH, the volunteers in the program should feel safe disclosing their personal information. This is an effort to recruit volunteers during a time in which companies like Facebook have seemingly failed in protecting vital data.
The Goal of ‘All of Us’
The $1.5 billion research program is not expected to yield immediate benefits for people who volunteer for a study that will last a decade, but the agency’s director, Francis Collins, says that All of Us represents “a national adventure that is going to transform medical care.”
Some of the study will be performed from the San Diego area. The plan is to create a huge database of information that explores why people get sick or stay healthy, and how these differ based on age, gender, race, and ethnicity. Volunteers will be asked to give blood and urine samples that could help reveal how environmental threats, such as toxins and air pollution, activate genes that cause disease.
Those who take part in the study will also be given surveys to take about their home life, work environment, and the state of their mental health. This is so physicians can get a wide range of information they can use to map out and creating more custom care for patients down the road. Special attention will be paid to studying troublesome genes, an area of science that is yielding new drugs, especially to fight cancer.
Partnering with the NIH
“The scale of All of Us is remarkable — enrolling a million participants from all walks of life — and just as remarkable is the untold value of the health data that will be collected,” said Dr. Eric Topol, director of the Scripps Translational Science Institute (STSI) in La Jolla. “By engaging participants as citizen-scientists, (the study) ultimately will empower us to move beyond one-size-fits-all medicine to the truly individualized medicine of the future.”
The NIH picked the STSI to help recruit volunteers for the program because of the institute’s access to information. It’s expected to bring in around 350,000 volunteers by itself. STSI can also gain access to those who have been underrepresented in past studies of this kind.
The NIH is also partnering with the likes of Walgreens, Quest Diagnostics and, locally, the San Diego Blood Bank and San Ysidro Health during the study. UC San Diego will also play a vital role. The university has set up a lab that will accept blood and urine samples, as well as perform regular exams and collect information.
“We’ll be asking people to give us data that might not be of immediate help to their own lives,” said Dr. Lucila Ohno-Machado, chair of the Department of Biomedical Informatics. “But it will benefit society through new discoveries that will help everyone. It reflects the same altruistic principle as donating blood to help others.”
Who Can Participate?
There aren’t a lot of requirements to join the study. You just need to meet a few qualifications.
- Enrollment is open to all eligible adults who live in the U.S. People of every race, ethnicity, sex, gender, and sexual orientation are welcome.
- No health insurance is required. Any appointments needed to take part are free. Please note, the All of Us Research Program is a research study and does not provide medical care.
- You can be healthy, or you can have a long-term health issue. There are no limits to taking part based on your health status.
- You don’t have to speak English to join. We have Spanish-speaking advisors to help you. In the future, more languages will be available, too.
- Those who are not eligible to join at this time include people who are: in prison, unable to consent on their own, and younger than 18. In the future, we hope to enroll these populations.
- Having a computer, tablet, or smartphone makes it easy to give health data to All of Us. It’s also a good way for us to keep in touch with you. However, these devices are not required to join.
Privacy and Consent
Everyone must provide their name and address to participate in the study. They will also be asked to provide their social security number, but are not required to give it. Volunteers are also not required to disclose their immigration status.
People will be contacted once a year to determine if their phone number or email address has changed. The NIH also says, “We might use social media or public listings to help us keep your contact information up to date.”
Names and other private information will be replaced with codes to protect identities.
“Even without your name, there is a chance someone could figure out who you are,” the NIH says on its website. “They could misuse your data. We believe the chance of this is very small, but it is not zero.”