In 2015 the National Institute of Health (NIH), launched its ‘All of Us’ research program stating that “the future of health begins with you.” The goal is to sequence the genomes of at least one million people to provide researchers with data that can help them understand how our biology, lifestyle, and the environment may affect our health. The laudable goal is the hope of finding treatment for hereditary diseases and perhaps even the prevention of genetic disease.
To date they have recruited over a half a million people who have been enrolled since May 2018, when the enrollment period opened. One must be 18 years of age or older to participate. As a benefit to the program, participants can request to receive their own health-related DNA information. Josh Denny, M.D., CEO of the All of Us program said, “this type of partnership with our participants is crucial for building trust and fulfilling our commitment we made to drive research that can offer meaningful insights for all.”
“All of Us” believes that giving researchers access to genetic data, along with access to individual’s electronic health records, will further research studies into precision medicine. Precision medicine is seen as the future of medicine, whereby therapies and treatments are individualized for each person, “perfectly tailored to each patient.” The program will focus on 59 genes and variants that are linked to certain cancers, heart conditions, blood diseases, and more. Mapping a million people’s genome they expect to see 2% to 3% of the enrollees will exhibit one of these genes or variants. To date more than 175,000 people have received their results with approximately 6,000 results each month.
I recall a conversation I had with a woman some years ago. Her father had died of Huntington’s disease, a rare inherited, progressive brain disorder. A local university hospital was offering genetic testing to her and her sister, so they could learn if they carried the gene and would eventually develop the disease. She told me how she didn’t want to know, so she didn’t take the test. On the other hand, her sister did want to know and her test results came back positive, that she was a carrier for the gene. She described rather painfully how her sister basically stopped living and enjoying her life, because she had this information. But there was nothing her sister could do with this information as there is no cure for Huntington’s disease. There are treatments available to deal with some of the symptoms, but it is progressive degenerative disease that so far cannot be stopped or reversed. She put her life on hold, waiting for the symptoms of the disease to appear. She on the other hand went on with her life, had children, and raised her family, preferring not to know if she carried the gene and would develop the disease. At the time of our conversation, which was several years after her sister was tested, she still had not exhibited any symptoms, nor had her sister, and yet, she had for all intents and purposes, stopped living her life.
I don’t know about you, but I worry about a government funded project that has gathered genetic information, given willingly by the public. Perhaps the stories of these sisters would have turned out differently under the “All of Us” campaign. Might these sisters be required to take the test? Might they be required to submit to genetic testing of their children? Or worse, might their unborn children be tested, and if carriers of the gene, be forced to be terminated? How quickly might ‘All of Us’ turn into some of us? I get a pit in my stomach and sense we are just taking a large step toward the tyranny of the state over healthcare decisions.
- Jennifer Lahl, MA, BSN, RN, is founder and president of The Center for Bioethics and Culture Network. Lahl couples her 25 years of experience as a pediatric critical care nurse, a hospital administrator, and a senior-level nursing manager with a deep passion to speak for those who have no voice. Lahl’s writings have appeared in various publications including Cambridge University Press, the San Francisco Chronicle, the Dallas Morning News, and the American Journal of Bioethics. As a field expert, she is routinely interviewed on radio and television including ABC, CBS, PBS, and NPR. She is also called upon to speak alongside lawmakers and members of the scientific community, even being invited to speak to members of the European Parliament in Brussels to address issues of egg trafficking; she has three times addressed the United Nations during the Commission on the Status of Women on egg and womb trafficking.