Today, Congresswoman Debbie Dingell (MI-12) sent a letter to Memorial Sloan Kettering (MSK) Cancer Center with questions about on the use and sharing of patient medical data with Paige.AI, a computational pathology and medical artificial intelligence start-up, which has exclusive rights to use MSK’s library of 25 million pathology slides.
Reporting from the New York Times and ProPublica uncovered an exclusive agreement between MSK and Paige.AI, detailing the financial conflicts of interest MSK has as equity holder in the company, with three additional MSK board members listed as investors.
In a letter, Dingell raised concerns about the degree of consent patients gave for the use of their tissue slides, and whether the anonymization practices adequately protected patient identities.
“While there are many potential advancements artificial intelligence applications will bring for patients and doctors alike, there are also many open questions about the impacts this technology will have on privacy and the use of deeply intimate patient data.” Dingell wrote.
Dingell continued, “While this tissue slide images appears to have been anonymized there are still serious concerns about patient privacy and the degree of consent patients have given regarding the reuse and distribution of their information.”
“While the breakthroughs that could potentially come from the use of artificial intelligence in medicine are life-changing for the millions of families across the globe impacted by cancer, we must ensure that patient confidentiality is protected at all times and that patients have the ability to choose where their data goes and for what purpose. The work Sloan Kettering has done and toward defeating cancer should be applauded, and prompt answers to these questions will give us confidence that your groundbreaking work will continue in an open, transparent and ethical way.”
The full letter is available here and below:
Dear Dr. Thompson,
This letter is in regards to the relationship between Sloan Kettering Cancer Center and the company Paige.AI. While there are many potential advancements artificial intelligence applications will bring for patients and doctors alike, there are also many open questions about the impacts this technology will have on privacy and the use of deeply intimate patient data.
A recent New York Times article detailing the relationship between Sloan Kettering Cancer Center and Paige.AI underscored those privacy concerns. The article details the agreement between Sloan Kettering and Paige.AI to use archives of patient tissue slides for both research and commercial purposes. While this tissue slide images appears to have been anonymized there are still serious concerns about patient privacy and the degree of consent patients have given regarding the reuse and distribution of their information.
With that in mind, I respectfully request answers to my questions regarding this arrangement and the protection of patient information:
- Does Sloan Kettering get consent from all patients to have their medical information used by a third party when they are admitted to your facilities?
- Did Sloan Kettering get consent from all patients whose medical information was shared with Paige.AI?
- Were the tissue slides shared with Paige.AI images of slides, or the physical slides themselves?
- Are patients able to opt-out of third party use of this information?
- If patients were given the ability to opt-out of this type of disclosure, were those patients excluded from the 25 million tissue slides shared with Paige.AI?
- What level of anonymization was used when providing tissue slides to Paige.AI?
- Were any personal identifiers not anonymized? For example, family history, gender, age, residence, etc.
- What notice was patients given when images of their tissue slides were sold to Paige.AI?
- According to the New York Times report, much of the data sold to Paige.AI was generated prior to the development of artificial intelligence technology as it exists today. How were patients able to give consent that their personal medical information can be used by a technology that did not yet exist?
- What custodial obligations does Paige.AI have to protect patient information under this data sharing agreement? And do those obligations extend if Paige.AI declares for bankruptcy?
- Has Sloan Kettering entered in to agreements like the Paige.AI partnership with other companies?
While the breakthroughs that could potentially come from the use of artificial intelligence in medicine are life-changing for the millions of families across the globe impacted by cancer, we must ensure that patient confidentiality is protected at all times and that patients have the ability to choose where their data goes and for what purpose. The work Sloan Kettering has done and toward defeating cancer should be applauded, and prompt answers to these questions will give us confidence that your groundbreaking work will continue in an open, transparent and ethical way. Towards that end, I request responses to my questions no later than close of business on Friday October 12, 2018.
Sincerely,
Debbie Dingell
Member of Congress
cc: Congressman Greg Walden
cc: Congressman Frank Pallone
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