Last week’s issue of Science contained a fantastic position paper (Raw Personal Data: Providing Access) by Jeantine Lunshof and George Church of Harvard and Barbara Prainsack of King’s College London.
The primary thesis of the article is that participants who provide data for research should have more visibility into the raw data collected. I wholeheartedly agree, and I think this quotation best captures the reason:
[P]roviding access to […] raw data is essential to taking individuals seriously as partners in research not merely as sources of samples and data.
To borrow a term I first heard from Isaac Kohane, I believe that “data altruists” are absolutely an untapped resource in helping to move research forward. Research participants who feel that there is a two-way street between themselves and the researchers will be more engaged, and will be active and effective recruiters for the cause. What’s holding them back?
Providing access to raw data would be a great way to begin to recruit participants in the cause of advancing research, but I do not believe it goes quite far enough. Access to raw data is necessary, but insufficient. The missing ingredient is a sense of control over their private data. I would argue that participants should have the rights (and mechanisms) to:
- Control the continued participation of their data in a study, including the ability to opt out entirely and to place limits on how (and by whom) their data may be used;
- Define how researchers may (or must) contact them for further uses and follow-ups;
- See detailed audit records detailing access to their data: who accessed it, when, and for what purpose;
- Allow or prevent sharing of private information with third parties;
- Make known their preferences regarding incidental findings.
Such capabilities are well within our technological reach. If we are building systems that are powerful enough to provide participants with access to raw data, why not go all the way and give them back some measure of control over their data? We’ve come a long way since Henrietta Lacks; it’s time our systems embodied those values.