Comments on: Ethics of Whole Genome Research http://www.eyeondna.com/2008/03/25/ethics-of-whole-genome-research/ How will it change your life? Wed, 08 Oct 2008 03:19:24 +0000 http://wordpress.org/?v=2.5.1 By: Mike Spear http://www.eyeondna.com/2008/03/25/ethics-of-whole-genome-research/#comment-56147 Mike Spear Tue, 01 Apr 2008 13:57:47 +0000 http://www.eyeondna.com/2008/03/25/ethics-of-whole-genome-research/#comment-56147 As an exercise to perhaps offer a 'consumer guide to personal genotyping' we have sent off my DNA sample to 23andMe, deCODE, and the DNA Ancestry project. We'll blog about the process draw on some of our own research cimmunity to compare results and so on, to help us answer some of the questions that the general publc have around the new commercial services. The issue of what happens to my sample and how will it be used has come up a couple of times already. In the case of 23andMe they do indeed make it very clear that you sample could be used in wider studies. In response to the posted comment on 23andMe not collecting a health history that is also true. However in the agreement I signed it also says I may be contacted to provide other information such as ancestry or health conditions, which would seem to close that gap. If I have any concerns about participation at that point I have the option to simply say no. But why not participate ? For the most part even if I find a potentially life altering revelation in my results I don't have a problem sharing it in a medical study and will probably share it on our blog so that the public is nore aware of what might be wiating for them when the results are in. One of the authors of the PLoS Biology article is a principal investigator on one of our projects and as my results come in and I face some of the issues you can be sure that Mr.Caulfield will be one of the first people I talk to. Mike Spear Genome Alberta As an exercise to perhaps offer a ‘consumer guide to personal genotyping’ we have sent off my DNA sample to 23andMe, deCODE, and the DNA Ancestry project. We’ll blog about the process draw on some of our own research cimmunity to compare results and so on, to help us answer some of the questions that the general publc have around the new commercial services.
The issue of what happens to my sample and how will it be used has come up a couple of times already. In the case of 23andMe they do indeed make it very clear that you sample could be used in wider studies. In response to the posted comment on 23andMe not collecting a health history that is also true. However in the agreement I signed it also says I may be contacted to provide other information such as ancestry or health conditions, which would seem to close that gap. If I have any concerns about participation at that point I have the option to simply say no.
But why not participate ?
For the most part even if I find a potentially life altering revelation in my results I don’t have a problem sharing it in a medical study and will probably share it on our blog so that the public is nore aware of what might be wiating for them when the results are in.
One of the authors of the PLoS Biology article is a principal investigator on one of our projects and as my results come in and I face some of the issues you can be sure that Mr.Caulfield will be one of the first people I talk to.

Mike Spear
Genome Alberta

]]> By: Dirk http://www.eyeondna.com/2008/03/25/ethics-of-whole-genome-research/#comment-56068 Dirk Thu, 27 Mar 2008 03:02:12 +0000 http://www.eyeondna.com/2008/03/25/ethics-of-whole-genome-research/#comment-56068 I have to say, the PLoS Biology article was well thought out. And the box with "potential risks" contains several very likely to happen examples!! I have to say, the PLoS Biology article was well thought out. And the box with “potential risks” contains several very likely to happen examples!!

]]> By: Barry Starr http://www.eyeondna.com/2008/03/25/ethics-of-whole-genome-research/#comment-56058 Barry Starr Wed, 26 Mar 2008 17:00:48 +0000 http://www.eyeondna.com/2008/03/25/ethics-of-whole-genome-research/#comment-56058 I wonder how useful the data will be anyway. 23andme doesn't collect any health history that I know of or even have a photo! I wonder how useful the data will be anyway. 23andme doesn’t collect any health history that I know of or even have a photo!

]]> By: Steven Murphy MD http://www.eyeondna.com/2008/03/25/ethics-of-whole-genome-research/#comment-56048 Steven Murphy MD Wed, 26 Mar 2008 00:59:40 +0000 http://www.eyeondna.com/2008/03/25/ethics-of-whole-genome-research/#comment-56048 That is precisely part of the problem I have with the corporate aggregation of this data. No IRBs!!!! -Steve www.thegenesherpa.blogspot.com That is precisely part of the problem I have with the corporate aggregation of this data. No IRBs!!!!
-Steve
http://www.thegenesherpa.blogspot.com

]]> By: SCG http://www.eyeondna.com/2008/03/25/ethics-of-whole-genome-research/#comment-56047 SCG Wed, 26 Mar 2008 00:23:53 +0000 http://www.eyeondna.com/2008/03/25/ethics-of-whole-genome-research/#comment-56047 Did I get it right? Basically the "consumer" pays for a "service" and "donates" his whole DNA to the company? He can't just obtain the service and get that *his* DNA is used only for that specific purpose he wants. Is this respectful of the independence of choice of the individual? Where is the right to withdraw? Did I get it right? Basically the “consumer” pays for a “service” and “donates” his whole DNA to the company? He can’t just obtain the service and get that *his* DNA is used only for that specific purpose he wants. Is this respectful of the independence of choice of the individual? Where is the right to withdraw?

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