While no conclusions or solutions were reached, the authors appeared to relish the feedback. Key discussion points included:
– There seemed to be support among the mostly clinical and academic audience that sharing patient data is permissible as long as no entity or company profits from the information. However, a few people from AI companies and other commercial interests were quick to point out that medical therapeutic progress is dependent upon shared patient data. The case of Henrietta Lacks, the famous African American woman whose cells powered many important medical discoveries and treatments, was raised as a case study in improper ethics.
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– Another critical point was the ethics of actionable data. Do researchers have an obligation to follow up with patients whose data clearly indicates a health risk? Ranschaert said that the answer in Europe is yes, based on existing ethical guidelines. There was a discussion that existing IRB research guidelines allow U.S. researchers also to inform patients about a medical threat
– Opt-in and opt-out consent strategies was also a vigorous point of focus. A few participants compared the permission screens that most click through when downloading from a new app or website as useful and adequate in meeting ethical standards for any imaging research.
“We received back hundreds of comments on the paper,” said Gies. "The paper is not perfect, and some people disagree with our conclusions. We're working on trying to reach a lot of people."
The paper can be viewed at:
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