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Available Expert - 23andMe partners with big pharma to use customer DNA for drug research

Friday, July 27, 2018

Queen’s University bioethicist Udo Schuklenk is available to comment on the ethics of a partnership announced this week between home DNA test company 23andMe and pharmaceutical giant GlaxoSmithKline to use DNA from five million 23andMe customers for drug research and design. 23andMe customers are automatically opted in to the program when signing up online and must choose to opt out.

“It is ethically unacceptable for 23andMe to take as consent the absence of customers clicking an opt-out link,” says Dr. Schuklenk. “There is any number of reasons why someone might not click that link that doesn't suggest consent. Concerns about individual 23andMe customers’ privacy have rightly been flagged.”

“Going forward, the only ethical way for this venture to proceed would be to offer this to new customers, asking them to pro-actively opt in as opposed to offering them to opt out,” he says. “We know from empirical research that participation rates in any program relying on opt-in are significantly lower, because they require a deliberative choice by people. The same is not the case in opt-out based programs. The very set-up of this venture suggests that its initiators are not quite serious about 23andMe's customers’ informed consent.”

NOTE: Dr. Schuklenk is the current Ontario Research Chair in Bioethics. He is available today from 12 pm EST onward.

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