Jan 22 2008
Why Science Can’t Share
It’s hard to believe that unwillingness to share is one of the biggest obstacles to the advancement of science today. But researchers and the institutions they work for expend so much time, money and effort collecting data that they are often reluctant to give it to anybody, even their most respected peers.
In today’s New York Times, biostatistician Andrew Vickers explains why sharing research data is so critical to the advancement of medical science, and describes some of the problems he has encountered when trying to obtain valuable information for analysis.
Why are researchers so reluctant to share? Maybe they fear their colleagues will see something in the data they themselves missed, or even worse, dispute their interpretation of what the information means.
“Scientists don’t want to be scooped by their own data,” Vickers writes in the Times. “Yet this is exactly what cancer patients need. They want new results to be published as quickly as possible and to encourage a robust debate on the merits of key research findings.”
23andMe was founded in part to address this problem – we plan to permit outside researchers who are looking for genetic factors underlying serious diseases and conditions to gain access to the 23andMe database (under the guidance of a research advisory committee and with guidelines to protect privacy). With the collaboration of our customers, we hope to help authorized researchers advance the progress of human genetic research and maybe even find treatments or cures for some of these ailments.
The support of our customers will be essential, because these researchers will need more than raw genetic data to make discoveries. They will also need personal information, which we plan to collect through voluntary surveys and questionnaires, sometimes in concert with authorized researchers.
Though it remains to be seen how many of our customers will want to be part of what we call consumer enabled research™, we are hoping their generosity will far eclipse that of some in the research community.
6 Responses to “Why Science Can’t Share”
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Cool. Will that data be free, or is 23andMe thinking of charging researchers for it?
Thanks for your comment. We’re still considering various options. Our goal is to significantly advance the pace of research, so we plan to structure our business in order to maximize that potential.
you and your readers may be interested in an article in which I have listed all the pros and cons of data-sharing in biomedical academia: Blood, Sweat and Grants: Honest Jim and the European Database Right. The url is http://www.lancs.ac.uk/fss/journals/gsp/docs/volume1number2/jbgspvol1no22005.pdf.
It is also published as a chapter in my book: Blood, Genes & Data: Naturally Yours?
[...] more than you’ve come to expectorate…nice one), a recent post is bluntly headed “Why science can’t share” and points us to this NYT article by a cancer biostatistician on the difficulties in [...]
speaking of privacy, I would like to see the service open up a bit between members. I would not mind making my profile public to other members, and likewise enjoy browsing other public members profiles.
I’m looking forward to seeing phenotype information added and made available to researchers.
I think you’ll find the user response much greater if you’re providing the data free, or at a nominal charge.