It seems strange to me that most research studies today simply refuse to make raw data available to the human subjects who enroll in those studies. Sometimes researchers attempt to purposefully design "memory holes" and other obfuscation, so it is difficult to figure out which data belongs to which volunteer, etc.
With the rise of citizen science, improved computing, decentralized access to sequencing and other tools, it seems inevitable to me that this set of institutional practices will eventually go away, or be reserved only for special cases rather than be the standard operating procedure.
One way to hasten the decline of data hoarding and accelerate its liberation is for more people to request access to raw data and to vote with their feet by favoring studies with equitable research practices. There are several "large cohort" studies in the planning stages, like the Genome 100k in the United Kingdom or the million veterans program in the US, that hope to enroll and perform genome sequencing on many thousands of citizens.
-- The Wellcome Trust Sanger Institute in the United Kingdom launched a public survey that will inform policy on how genome studies in the UK are governed. If you have a minute, even if you don't live in the UK, please take the survey and express your favor for access to raw data:
https://survey.sanger.ac.uk/genomethics/
https://survey.sanger.ac.uk/genomethics/
Hopefully that doesn't dissuade you from getting involved, but...To give you a sense of how hopeless activism on this issue can be at times, consider the million veterans project (mvp). Back in 2009, they published a survey of veterans' attitudes about their participation in genomic research (much like the Sanger survey above). Two major findings were that:
a. "Nine of 10 [veterans] agreed that they would want to know all of their research results"
b. "two-thirds of respondents said they would be less likely to join the study if they did not receive research results back"
So, mvp plans to return data to participants right? Wrong. As their FAQ states: "It will not be possible to give participants results of the blood tests"
Jason Bobe
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