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You probably don’t own any of your medical data. Surprised? Here’s something that might be more surprising: You probably agreed to that.
Your hospital and doctor records, lab and radiology tests, genetic information, even actual tissue removed during a biopsy or other surgical procedure probably is owned by someone else thanks to the fine print of the consent form you signed. Others can study it, sell it or do whatever they want without notifying or compensating you – as long as the data is kept anonymous.
The New York Times recently reported about how the Memorial Sloan Kettering Cancer Center was licensing patients’ personal data to a for-profit artificial intelligence start-up. Memorial Sloan Kettering also has a financial stake in the start-up.
Steven Petrow at The Washington Post investigated this issue further after the Times article. He, his sister and late mother were all patients at Memorial Sloan Kettering. He found that the hospital signed a partnership with the start-up Paige.AI, giving the company exclusive access to the center’s 25 million slides of patient tissues. This agreement also limited access to the data to Paige.AI instead of making it available to other researchers worldwide.
This personal data is lucrative, too. In 2017 the buying, selling and trading of our personal medical data was around $14 billion, according to a study by BIS Research.
Giving a research center consent to use your data to develop more accurate diagnoses or new life-saving therapies might be a good choice. However, Petrow admitted he did not even know this was a choice to make when signing the consent form.
In 2017 the buying, selling and trading of our personal medical data was around $14 billion
“We really should have read those consent forms more closely,” he wrote. However, “That was not the right time to be trying to make sense of such important information.”
The issue raises other questions, such as compensation for patients and more transparency. Remember, you can always strike out provisions of a consent form you don’t agree to, and you can’t be denied treatment on that basis.
Are you concerned about the use of your personal medical data? Let us know at Voices for Affordable Health.