Comments on: Research participants have a right to their own genetic data http://spittoon.23andme.com/2009/11/04/let-research-participants-access-their-genomes/ A receptacle for genetic knowledge. Sat, 13 Feb 2010 03:51:43 +0000 http://wordpress.org/?v=2.9 hourly 1 By: Phantom http://spittoon.23andme.com/2009/11/04/let-research-participants-access-their-genomes/comment-page-1/#comment-2412 Phantom Thu, 05 Nov 2009 14:01:31 +0000 http://spittoon.23andme.com/?p=5270#comment-2412 The only surprising thing about the views expressed above are that there are people so paternalistic that they would deny patients the right to access their own data. I would also point out that there is no such thing as "non-actionable" information. Patients may chose to undertake some life projects early (vacation, climb a mountain, have children... or not!) instead of delaying until a retirement that may never come. They may save additional money in preparation for future medical expenses. They may chose to live in a city close to their family instead of accepting that promotion on the other side of the country. The only surprising thing about the views expressed above are that there are people so paternalistic that they would deny patients the right to access their own data.

I would also point out that there is no such thing as “non-actionable” information. Patients may chose to undertake some life projects early (vacation, climb a mountain, have children… or not!) instead of delaying until a retirement that may never come. They may save additional money in preparation for future medical expenses. They may chose to live in a city close to their family instead of accepting that promotion on the other side of the country.

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