Consent for online research calls for transparency, innovation

Can researchers ethically use health information that people openly reveal about themselves online?

That's an example of how traditional models of informed consent haven't kept up with a world of Facebook, patient forums and blogs, write bioethicists in an essay published in Science Translational Medicine.

While acknowledging that the web can be a treasure trove of information, it "should not be turned into the Wild West of health research; rather, its unique features must be used to effectively and creatively satisfy the ethical requirements of the research consent process," says co-author Jeffrey Kahn, the Levi Professor of Bioethics and Public Policy at the Johns Hopkins Berman Institute of Bioethics.

Kahn says that the answer to the above question is "no," according to a Berman Institute announcement. A person posting information in a non-research context has not consented to that information being used for research. Context is central to information posted online, and should also be central to how consent is obtained, he says.

"The web is inherently interactive, and that can be used in innovative ways to create a collaborative consent process that will build trust, a key element in making web-based research more useful, more user-friendly and ultimately more respectful of the rights and interests of individuals whose information is collected," he says.

While traditional methods of obtaining informed consent don't translate well online, neither do opt-in or opt-out approaches used by consumer websites, according to Kahn.

He and his colleagues call for the transparent disclosure of research uses of online information in a way that gives users robust control over their information, which is necessary to build the trust required in all research.

While online tools and social media have made it easier to recruit patients for clinical trials, the move to digital records in general has plenty of folks worried about the privacy and security of their personal information. With the move to EHRs, patients want to retain control over who sees their information and tend to be leery of health information exchange.

Then, too often the technology doesn't support research. Cincinnati Children's Hospital Medical Center decided to gain patient consent at the time of registration for use of residual clinical samples for research, but found an array of workarounds were required for its system to function as required as it built a biobank of samples.

To learn more:
- here's the essay (subscription required)
- read the announcement

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