It’s Time to Burn Medical Consent Forms | WIRED

Attempts at reform have not gone far enough. The problem isn’t the documents—it’s how to frame consent in the new health ecosystem.

Save this story Save this story Health data’s potential can be vertigo-inducing, with seemingly limitless insights available to be mined from data sets old and new. The risks, too, can turn the stomach: faulty and biased algorithms; the erosion of privacy; data-driven exploitation. How to explain this to a patient, or a potential research subject? Where to even begin? Apparently, with paperwork. The consent form has traditionally served as a front door to a research project–a summary of what the research is, what participation entails, and what the risks are. All of that information is collect

related reading

• Ethics in medical research: General principles with special reference to psychiatry research - PMCncbi.nlm.nih.gov
• CPSO - Consent to Treatmentcpso.on.ca
• PCORI - Engagement in Research: Foundational Expectations for Partnershipspcori.org
• I was part of a human subject research study without my consentnews.ycombinator.com
• How Health Data Gets Sold: Moving From Third-Party to First-Party | Out-Of-Pocketoutofpocket.health
• Complementary Medicine | UW Department of Bioethics & Humanitiesdepts.washington.edu
• Real Patients | Real Voices Transforming Healthcaresavvy.coop
• Clinical Ethics and Law | UW Department of Bioethics & Humanitiesdepts.washington.edu
• Welcome • meshmesh.tghn.org
• The Cosmos Collaborative: A Vendor-Facilitated Electronic Health Record Data Aggregation Platformncbi.nlm.nih.gov
• Declaration of Helsinki - Wikipediaen.wikipedia.org
• Project Patient and Public Involvement — Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciencesndorms.ox.ac.uk