It’s a good bet that the fine print of the consent form you signed before your latest test or operation said that all the data or tissue samples belong to the doctor or institution performing it.
They can do whatever they want with it, without notifying or compensating you, although the data must be depersonalized to make sure you are anonymous.
I’ve signed a number of those forms myself, and I’ve never thought about it until recently, when I read that Memorial Sloan Kettering Cancer Center had been criticized for licensing patients’ personal data to a for-profit artificial intelligence start-up in which the hospital holds an equity stake.
My sister, late mother and I have been patients at Memorial Sloan Kettering. So I was interested in the dual questions of privacy and ownership.
The hospital signed a partnership deal with the start-up Paige.AI that gave the company exclusive access to the center’s 25 million slides of patient tissues in the name of cancer research.
This is big business. In 2017, the legal buying, selling and trading of our personal medical data totaled $14 billion. Memorial Sloan Kettering’s partnership with Paige.AI is just a drop in this big bucket.
Patient health data is routinely sold or licensed to research companies, medical data brokers who pool the data — doctor and hospital records, insurance claims and prescriptions.
This is all perfectly legal, and courts have upheld it even if you didn’t quite know what you were agreeing to.
As a cancer survivor, I know the importance of advancing medical science. When I was diagnosed with testicular cancer in 1984, the 10-year survival rate was greater than 90 percent. Had I been diagnosed a decade or so earlier, I’d probably be dead.
What happened in the interim? Researchers had developed a new chemotherapy cocktail that changed the prognosis for my cancer. As a beneficiary of that lifesaving research, I am thankful to the doctors and staff who cured me.
I paid only cursory attention to the consent form I was given before treatment.
In 2013, my mother was similarly focused on the dangers and benefits of her proposed lung cancer surgery, and neither she nor I read the form closely. Neither of us considered what might become of her tissues and organs.
Memorial’s current surgical consent form, which is typical, includes this sentence: “[T]he hospital has my permission to use [my] tissues and organs in any way that advances medical science, including the development of biomedical products in which I claim no financial interest.”
Had Mom been asked directly for permission, I’m certain she would have said yes. I’d sign away too. But looking at that onerous consent language, all I can think is, “Wow — we really should have read those consent forms more closely.”
Our data is meant to be stripped of personally identifying characteristics — name, Social Security number and addresses.
Adam Tanner, author of “Our Bodies, Our Data: How Companies Make Billions Selling Our Medical Records,” writes that “as data-mining technology becomes ubiquitous,it also makes it easier to learn a previously anonymous identity.”
Jodi Daniel, a lawyer specializing in digital health and health information policy, said patients do not own their medical records in 49 out of 50 states. The exception is New Hampshire, where patients and providers can claim ownership.
The Health Insurance Portability and Accountability Act, a 1996 federal law that protects health privacy, takes no position on ownership, which wasn’t contemplated back in the 1990s.
The value of biodata has been known to researchers for decades. Witness the story of Henrietta Lacks, whose “immortal” cell line — the first-ever tumor cells to reproduce indefinitely — gave researchers data that led to new vaccines, cancer treatments and in vitro fertilization.
In 1951, Lacks was not offered even the most cursory opportunity to consent, but neither she nor her heirs were legally entitled to compensation for the advancements her cells made possible.
Patients are regularly asked to sign what are called “blanket” consent forms, which means agreeing to all the terms. Health advocates say you can strike clauses that you don’t agree with, but that isn’t looked upon kindly.
When I asked Roger Wilson, the chair of Memorial Sloan Kettering’s Institutional Review Board and the director of operating room operations, about this, he said “operationally [it] is problematic, because individuals might say, ‘Well, you can use this part but you can’t use that part,’” which he fears “introduces the potential for error.”
Jennifer Miller, an assistant professor at the Yale School of Medicine and a founder of Bioethics International, doesn’t think blanket consents are ethical.
“Why are we forcing sick patients to think about data ownership issues right before they get surgery?” she said.
In an era in which ownership of our data is being debated, it would seem ownership of our own bodies needs to be explored.
What I know is this: The next time I have surgery, I will ask for the consent form well ahead of time and take the time to read and understand it, in consultation with my doctor. I will strike out provisions I don’t agree to, knowing I can’t be denied treatment on that basis.
If Memorial Sloan Kettering or any other hospital wants to use my personal data for scientific research, I will give it to them as my gift — I know the value of that research. As my mother taught me: Don’t take advantage of those under duress.