Healthcare Consent and Its Discontents image

EMR & EHR, May 6, 2016
Andy Oram


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Andy Oram, an editor specializing in open source, software engineering, and health IT, attended the Petrie-Flom Center's 2016 annual conference, "Big Data, Health Law, and Bioethics," on May 6, 2016. From his three-part review of the event:

By no means did the speakers and audience at this conference agree on what should be done to fix informed consent (only that it needs fixing). The question of informed consent opens up a rich dialog about the goals of medical research, the relationship between researchers and patients, and what doctors have a right to do. It also raises questions for developers and users of electronic health records, such as:

  • Is it ethical to save all available data on a person?

  • If consent practices get more complex, how are the person’s wishes represented in the record?

  • If preferences for the data released get more complex, can we segment and isolate different types of data?

  • Can we find and notify patients of research results that might affect them, if they choose to be notified?

  • Can we make patient matching and identification more robust?

  • Can we make anonymization more robust?

A few of these topics came up at the conference. The rest of this article summarizes the legal and ethical topics discussed there.

This review was published in three parts. Read them all!

bioethics biotechnology health information technology health law policy human subjects research regulation