It’s hard to believe that unwillingness to share data 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.