Ethics of Whole Genome Research
by Dr. Hsien-Hsien Lei
Posted March 25, 2008 in DNA and the Law, DNA in General
Yesterday, I touched on how consumers can prepare to use their genetic information to gain access to personalized medicine. On a related note, consumers should also be prepared to consider options for contributing their genetic information to research efforts. Commercial companies, such as 23andme, have made no secret of their desire to use their customers’ data for “the greater good.”
While we measure many hundreds of thousands of data points from your DNA, only a small percentage of them are known to be related to human traits or health conditions. The research community is rapidly learning more about genetics, and an important mission of 23andMe is to conduct and contribute to this research. By obtaining 23andMe’s services, you are agreeing to contribute your genetic information to our research efforts as described below. These efforts could translate into meaningful information about your genetics. [emphasis added]
The ethics of whole genome research in both the private and public sectors are explored in a consensus statement published in PLoS Biology. The following considerations are mentioned and recommendations for the first four are given.
- Consent
- Duty to recontact study participant
- Right to withdraw from research
- Return of research results
- Public data release
- Commercialization
- Patenting
- Benefit sharing
- Genetic discrimination
I must admit that discussion of ethics generally baffles me because I get so caught up on both sides (or maybe there are more than two sides?!). So I direct you to the Predictive Health Ethics Research (PredictER) Blog for further discussions of thorny issues surrounding genetics. PredictER is based at the Indiana University Center for Bioethics.
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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?
That is precisely part of the problem I have with the corporate aggregation of this data. No IRBs!!!!
-Steve
http://www.thegenesherpa.blogspot.com
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 have to say, the PLoS Biology article was well thought out. And the box with “potential risks” contains several very likely to happen examples!!
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