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Animal Ethics Biosafety Human Research Ethics Research Integrity

23andMe, moving beyond consumer DNA tests, is building a clinical trial recruitment business – STAT (Rebecca Robbins | September 2019)

Posted by saviorteam in Human Research Ethics on November 23, 2019
Keywords: Consent, Genetics, Human research ethics, Institutional responsibilities, International, Medical research, Privacy, Protection for participants, Researcher responsibilities, Respect for persons
A model of a double-helix spire

SAN FRANCISCO — Consumer genetics giant 23andMe announced Thursday that it would move deeper into the business of clinical trial recruitment, partnering with a fast-growing startup to help match its customers with nearby study sites based on their diseases, demographics, and DNA.

[Our image library isn’t working at the moment, please bear with us while we work to resolve this problem.]
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This story touches on a tricky problem: The use for recruitment purposes of a service that people would have understood to be private and not for research purposes.

The Silicon Valley company has for months been quietly making inroads into clinical trial recruitment by emailing customers who’ve opted in with recommendations about studies that might be appropriate for them. It has recruited for studies, both interventional and observational, in disease areas including Alzheimer’s, Parkinson’s, attention-deficit hyperactivity disorder, eczema, and liver disease, a spokesperson for the company confirmed.
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But the new partnership with TrialSpark, which offers a tech-powered alternative to traditional contract research organizations, may help 23andMe address one of the biggest challenges in clinical trial recruitment: geography. The idea is that patients who want to enroll in a clinical trial centered out of, say, Memorial Sloan Kettering Cancer Center, won’t have to fly to New York and can instead participate by visiting their local doctor’s office.
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