The federal government has just launched a 10-year, $1.5 billion project for which researchers want your information.
All of it.
Medical records, mental-health records, lifestyle details, personal habits, physical measurements, blood pressure, height, weight, blood and urine samples, details on health-care visits, procedures, medications, and electronic health records, among others.
Oh, and DNA, too.
It’s called All of Us and scientists say they want at least one million people to be under observation on an ongoing basis.
Explains one federal report, the effort by the NIH has the goal of developing “a 1,000,000 person-plus cohort of individuals across the country willing to share their biology, lifestyle, and environmental data for the purpose of research.”
A “soft launch” already has been accomplished, and partners already part of the plan include the TransAmerica Precision Medicine Consortium, Biobank, San Ysidro Health, University of Arizona, University of Pittsburgh and a long list of federal agencies.
The plan has drawn a skeptical assessment from Twila Brase, whose Citizen’s Council for Health Freedom long has expressed concerns about the privacy of health information once it’s turned over to researchers.
She’s also preparing to release “Big Brother in the Exam Room,” through her website, a book on the same topic.
She’s concerned that people won’t realize what is involved in the research when they sign a consent form giving the government virtually unlimited access to their health records – even those they don’t know about.
Brase, an R.N. who has been called one of the “100 Most Powerful People in Health Care,” pointed out that the Wall Street Journal not many months ago had an extended report on a “crime gene,” which reportedly linked a person with a propensity for violent behavior.
A BBC report on that topic, which came out in 2014, claimed that it had identified two genes, and “those with the genes were 13 times more likely to have a history of repeated violent behavior.”
Brase said those approached about participating in the new million-person study may think it’s a good idea, that it will bring about solutions to cancer, Alzheimer’s and more.
But, “a person approached with this idea of giving up DNA… I don’t think that they may want all the kinds of research that could be done,” she said.
For example, their data could be used for race-based research, or other “objectionable purposes … things you can’t even imagine today.”
Then there’s the availability today of gene editing, through the CRISPR project, and more.
What would study participants’ reaction be if there was found a gene editing process “to make people more social justice minded?”
She said DNA researchers can reveal information participants may not want to know, and, in fact, may regret being told – like one has a propensity for dementia.
Even assurances given regarding the future use of DNA data are not reliable, because in a federally funded project, Congress can simply change the ground rules.
A recent report concerning artificial intelligence in the medical field noted, “An aspirational goal for health and health care is to amass large datasets (labeled and unlabeled) and systematically curated health data so that novel disease correlations can be identified, and people can be matched to the best treatments based on their specific health, life-experiences, and genetic profile.”
Of course, to accomplish that among the factors that would need to be evaluated would be economic stability including employment and income, housing, parks and playgrounds, language and literacy, hunger, social integration and discrimination, and quality of health care.
Genetic information also must be included in this enterprise.
“To gain a complete picture of health, data from genetics, health care delivery and outcomes, and the social determinants of health should be integrated. This could include, for example, data on exercise, addictions, diet, the reporting and sharing of family history, treatment experiences, and social consequences associated with a chronic disease, and the widespread collection of health-relevant information from wearable devices and smart technology platform apps,” that report explained.
The NIH explains among its goals is finding correlations between activities, physiological measures and environmental exposures.
An advisory panel for the program just last month opened its meetings, which are scheduled to continue next in August.
Project director Eric Dishman says more than 14,000 participants already have been enrolled and says access to electronic health records will be key – in fact, mandatory.
The Federation of American Scientists points out that any such programs “raise knotty questions of data security and personal privacy.”
“No amount of de-identification (anonymization) of the data will guarantee the privacy protection of the participants,” the report said.
The AI report noted that the goals include fetching data from people through “wireless sensor technologies,” including data from mobile and wearable devices, and gathering details on the geospatial/environmental data.
The report also noted that the $1.5 billion is probably just a beginning of the money that will be demanded.
“While this may appear to provide the funding needed to create the data resources envisioned … it is like that significantly more funding may be both necessary and warranted to successfully populate the database and distribute this data to the research community and public,” the report said.
That report notes that privacy and trust will be major issues to address.
“Participants may not want to share all of the required information and so a mechanism must be put into place to enable participants to choose which pieces of information can be released and to whom,” it found.
The FAS concerns echoed Brase’s concerns, which include the direction of the research.
“We don’t know where this is going. It behooves everybody to be very cautious before they just wholesale give their DNA to federal experiments,” she told WND.
What if one’s DNA is used for a chimera, she wondered.
Or would people be happy with mandatory gene editing should research suggest that would cut health care costs?