The US health authorities are looking for one million people willing to share their DNA and, for ten years, their health habits, large and small, to advance science.
The US government on Sunday launched a nationwide recruitment campaign for a very ambitious experiment: by compiling a database rich enough to compare the genetics, lifestyle and environment of people from all walks of life, researchers hope to better understand why and how some escape the disease, but not others, and thus better customize prevention methods and therapies.
The director of the National Institutes of Health (NIH) of the United States, Dr. Francis Collins, explains that the project “All of Us Research Program” is a “national adventure that will transform health care.”
The US government has provided US $ 1.45 billion over 10 years for the initiative, whose success will largely depend on public interest in registering online or through health centers participants.
The Americans seem already interested in the project: more than 25,000 people have been recruited for a year, as part of a pilot project.
Why study so many people?
Today’s health care is, in most cases, designed in the same way for all, depending on the average individual’s response in clinical studies involving a few hundred or even a few thousand people with a specific health problem.
Most people who agree to participate in these studies are white, which raises uncertainty about the best care for people of other ethnicities.
“All of Us” is part of a move towards “Precision Medicine”, which uses our personal characteristics to prevent and treat the disease. Researchers need a very large number of participants to learn enough to be able to customize care: healthy people or not, young and old, urban and rural people, blue-collar workers and white-collar workers – and members of all ethnicities.
The study is only recruiting adults for the moment, but children will eventually be included.
If “biobanks” with at least 100,000 people already exist, the NIH project aims to create the largest and most diverse biobank in the world. At least half of the participants will have to come from groups that are traditionally underrepresented in medical research, said Collins.
Genes do not tell everything
Obviously, your genetic code has an impact on your risk of suffering from certain diseases. But other factors are also for something.
Participants will first share their electronic health record and periodically submit questionnaires about their diet, sleep, environment, and other aspects of their lifestyle. They may also be asked to wear physical activity monitors or other sensors.
They will provide a blood sample and submit to a genetic analysis later this year, first to study the “variants” of DNA that have an impact on the risk of disease, said Dr. Collins. A complete mapping of the genetic code of one million people would be too expensive, but this comprehensive approach will still be used with some participants.
The first lessons that Dr. Collins hopes to learn will be about resilience: Why do some people maintain an iron health even if they smoke and eat poorly?
“We just do not understand how these people do to get away with it,” he admitted.
Unlike most medical studies, participants will have access to their own findings, in collaboration with their physician, long before the study comes to more general conclusions.
A warning, however: researchers are still asking many questions about the best use of genetic testing. Despite this, “we will do our best to help doctors understand what it means,” said Dr. Collins.
The benefits could materialize quickly: the genetic variants may testify to a vulnerability to the side effects of over a hundred drugs, information that can help to choose the best treatment for the patient.
The NIH says it has made every effort to protect itself from potential theft of personal information. Participants’ medical data will be stripped of any identifying information, and this data will be replaced by a code. Only researchers meeting certain security criteria will be able to access the data.