Just got this email, and I thought I would share with my readers:
I’m a biologist from Germany and together with 2 fellow biologists I’m currently working on a project that evaluates the sharing of raw data from DTC-genetic-testing companies like 23andme. I was genotyped myself and have already published the data set on GitHub and I there are other people who already did the same (i know the list of the SNPedia). But up to now these data sets are scattered all over the net and nearly none of them have attached phenotypic data.
What we are working on (and would like to see around) is a website that collects the genetic datasets as well as phenotypic data. This would make it much easier to find appropriate data and in the end – as long as there are enough users – it could become a resource for a kind of open source GWAS, similar to the idea behind the research 23andMe performs in it’s walled garden right now.
But publishing genetic and phenotypic data freely accessible on the net is still seldom seen and many people object the idea because of privacy concerns. We would like to know how many people in principle would like to participate in something like this and for what reasons they would like it (or not). So we created a small survey that asks those questions, which can be found at http://bit.ly/genotyping_survey
// Bastian Greshake
I’ll be honest that I’m a lot more sanguine about release my genotype than entering my endophenotypes and what not in a public place. Genotypes give you probabilistic understanding, which you can gain in other ways. A lot of morphology is visible, and so there’s no privacy. But it’s a lot dicier when people want you to share how often you’ve taken anti-depressants. I think we’ll get to the stage where there will be less stigma and transparency will be the norm, but we’re not there yet….
(the survey took me less than 2 minutes, for what it’ worth)