Would you share intimate details about your health in the hope that it would someday help scientists find better ways to fight such afflictions as cancer, dementia and heart disease?

Your health care provider may soon ask you that question as part of one of the largest efforts in American history to decipher how people’s genes, lifestyle and environment affect their well-being.

In a move that relies heavily on altruism, the National Institutes of Health Sunday will begin trying to convince one million people across the country to give scientists access to everything from their electronic health records to the details of their genetic make-up.The NIH is also asking people to trust that it will protect their data at a time when there have been major privacy breaches everywhere from Facebook to the National Security Agency to health centers.

The $1.5 billion “All of Us” 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.”

The study — which will be partly run from San Diego — will create a huge database that scientists can use to explore why people get sick or stay healthy. They’ll also examine how that varies among people of different ages, gender, ethnicity and race.

Volunteers will be asked to give blood and urine samples that could help reveal how environmental threats — like toxins and air pollution — activate genes that cause disease.

The San Diego Blood Bank will help collect blood samples for the National Institutes of Health “All of Us” study. (Howard Lipin/Union-Tribune )


The study also will exploit the boom in wireless, wearable sensors that can be used to track people’s blood pressure, sleep cycle and mobility.

And the study aims to look at personal characteristics of its participants.They will be asked to fill out online surveys that focus on their home, work and family life, and the state of their mental health.

The study is meant to give physicians the sort of wide-ranging information they need to customize patient care, a movement that’s variously called “personalized” and “precision” medicine. Special attention will be paid to studying troublesome genes, an area of science that is yielding new drugs, especially to fight cancer.

“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 chose STSI to play a leading role in recruiting volunteers from across the country. If the study catches the public’s imagination, the company could wind up enrolling as many as 350,000 people on its own. The goal is to attract as many volunteers as possible from groups that have historically been under-represented in medical research.

The NIH points to a headline on Smithsonian.com that reads, “The DNA Data We Have is Too White. Scientists Want To Fix That.”

The participants will be served by such partner organizations as Walgreens, Quest Diagnostics and, locally, the San Diego Blood Bank and San Ysidro Health.


UC San Diego, the nation’s fifth largest research university, also will play a key role. The school has set up a center where it will take blood and urine specimens, and give physical exams — work that’s considered fundamental to the study’s success.

“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 at UC San Diego and a member of the All of Us team.

“But it will benefit society through new discoveries that will help everyone. It reflects the same altruistic principle as donating blood to help others.”

To help the public understand the study, the Union-Tribune has broken All of Us into digestible pieces with the help of the NIH and local scientists and physicians.


ELIGIBILITY AND ENROLLMENT

All of Us is far wider in scope than most major public health studies, many of which focus on a single disease. So the NIH must recruit a huge number of people for the project. The agency has made it very easy to participate. Anyone age 18 or above can enroll. People won’t be turned away if they have a pre-existing health condition. They can choose which tests and surveys they want to participate in. They don’t have to be an American citizen. And they can leave the study whenever they want.

Prospective volunteers can enroll at the study’s website, joinallofus.org, or by downloading the study’s smartphone app “All of Us Research Program” available for free on Google Play and the App Store. People also have the option of enrolling through their health care provider if the company is affiliated with the research project. That includes UC San Diego Health and San Ysidro Health.

Spanish-speaking advisors will be available to help people who do not speak English. There are no sign-up fees, and participants don’t need health insurance. This is a research study, not health care.


PRIVACY AND INFORMED CONSENT

All participants must provide their name and address. And they may be asked for their Social Security number but don’t have to provide it. Nor does anyone have to reveal 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.”

Personal identifiers — such as names and birth dates — will be replaced with a code to protect privacy.


“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.”

If there’s a data breach, participants will be notified. Such breaches are not uncommon in government. Hackers have stolen data from such privacy-minded institutions as the National Security Agency and the Defense Department. Public and private health care providers also get targeted, partly because electronic health records can be sold for hundreds of dollars or more on the black market.

As part of educating people about what’s at stake, the NIH will require volunteers to read and approve informed consent documents that specify how a test and survey will be conducted and how the data will be used.

The NIH says it will ask volunteers to state their race, ethnicity and gender because it “helps researchers learn if the things that affect health are the same in different groups of people.”


SHARING DATA WITH DONORS

The agency says that it will provide volunteers with the data that it collects on them “as well as certain study results, to help you know more about yourself.” And the data will be in a form that people can share with their physicians.

The NIH has been clear in saying, “You will not get direct medical benefit from taking part in All of Us.” And the agency has said that volunteers won’t profit financially from discoveries made by researchers, including those involving commercial drug companies.

But the NIH has been vague about what would happen if scientists discover that a volunteer has a major medical issue. That’s because the agency is beginning to enroll volunteers before it has figured out which people will be given which tests, and how and when some key information will be shared with those who participate.


ELECTRONIC HEALTH RECORDS

About 90-percent of office-based physicians maintain electronic health records on their patients, a figure that has roughly doubled over the past decade.

Some physicians complain that the EHRs are used more for billing purposes than tracking what’s happening with a patient. The NIH says the records represent a medical treasure trove.

But the agency speaks in cautionary terms, telling prospective donors online, “We will see data about your health problems, test results, medical procedures, images (such as X-rays), and medicines you take. Health records can contain sensitive data. For example, they may tell us about your mental health, or use of alcohol or drugs. They may contain sexual or infection data, including HIV status.”


Researchers are eager to tap such information.

“Scientists want the record(s) so they can begin to identify patterns,” said Katie Baca-Motes, director of the All of Us participant center at STSI. “For instance, they want to figure out why treatments are effective in some people, but not others, or why side effects to certain drugs differ across people.”

Ohno-Machado said, “Many studies favor just one way to collect information over the other — either data captured in electronic medical records or information provided by participants themselves. In All of Us, both types of information will be available for research. By providing a more complete picture of a person’s health, researchers will be better equipped to understand disease progression and factors that worsen or improve health.”

WHOLE GENOME SEQUENCING


The cost of sequencing a person’s genome has plummeted in recent years, partly due to advances made by Illumina, a San Diego life sciences company.

And sequencing is starting to lead to important breakthroughs. Last August, the FDA approved the first gene therapy to treat a type of leukemia. A different gene treatment was approved for lymphoma two months later. And in December, the agency approved a gene therapy to fight an inherited disease.

But the NIH might not be able to quickly capitalize on such advances in its new study. The agency has yet to decide how many people will be sequenced, and how such data will be shared with volunteers.

“We would make the raw genomic sequence data available to participants who request it, though many people may be more interested in the interpretation of that data and what it means for their health,” said Katie Rush, an NIH spokeswoman.


“We’re planning a pilot study now on the responsible return of genetic information to participants to determine the most appropriate way to do that, and also thinking through what resources would be helpful for providers.”

That means that the study’s volunteers might have to pay to have their DNA analyzed, which can be expensive. And most physicians haven’t been trained in how to precisely use genetic data to treat patients. UC San Diego is examining how it can do a better job in preparing its medical students for the genome revolution.

Scientists are hoping things get sorted out soon.

Sequencing would help “uncover the causes of rare genetic diseases that have never been found because we haven’t looked at the information in a deep way with enough people,” said Dr. Steven Steinhubl, director of digital medicine at STSI.


“These causes could explain why some people respond to common therapies, but some don’t. Or why someone who is young and lives a seemingly healthy lifestyle would have heart problems.

“The function of much of the human genome is still a mystery.”

PHYSICAL EXAMINATION

Volunteers will decide what kind of data they will share. Researchers are hoping they’ll consent to a basic physical, which involves taking their blood pressure, heart rate, height and weight, and measuring their hips and waist.


“This information is part of what makes us individuals, and these factors affect our health,” said Steinhubl.

Ohno-Machado also sees practical applications, noting that high waist measurements are linked to an increased risk for type 2 diabetes, heart disease and other conditions.

“There are ethnic and age-related differences in body fat distribution that might affect a doctor’s ability to use waist circumference to accurately predict disease risk,” Ohno-Machado said.

“The more people participate in All of Us, and the more diverse their backgrounds, the more these specific differences will emerge.”


MOBILE DEVICES

The NIH is still deciding what kind of wireless monitoring devices it will ask volunteers to wear. It will receive lots of guidance from the Scripps Translational Science Institute in La Jolla, a pioneer in testing mobile technology.

STSI says it’s interested in exploring questions like, “What should a person’s blood pressure be when they are stuck in traffic or late for a plane? People will have individual responses to these stressors due to a variety of factors, from genetics to diet to sleep patterns and those responses can lead to different long-term repercussions for their health.”

ONLINE SURVEYS


The NIH also is still sorting through the kind of survey questions it will pose to volunteers. But the survey is expected to include queries like: In general, how would you rate your mental health, including your mood and ability to think? How often did you have a drink containing alcohol in the past year? What terms best express how you describe your gender identity?