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.
Related Posts:
Eye on DNA Links for 24 July 2007...
DNA Quote: Philosopher Olivier Abel...
National Human Genome Research Institute Science Reporters’ Seminar...
DNA Poll: Patenting Genes...
NHGRI Director Francis Collins to Step Down on August 1...
I Found Francis Collins!...
BioMarker Pharmaceuticals Launches the Gene Essence Test...
Please note that comments left using the form below will be publicly displayed. If you'd like to correspond with me privately, please email me at hsien@eyeondna.com.
If your comment doesn't show up immediately, it's probably in moderation. I will approve it as soon as I can! Thanks for your patience.
5 Comments »
Note: Posting will be sporadic while I'm on maternity leave.
Search Eye on DNA
- Consumer Genetics Show 2009 in Boston
- Rule of Thumb on Speeches About Science
- Analysts Say deCODE Genetics Headed for Bankruptcy Court
- Genetically Engineered HTC Touch Diamond Phone
- Putting Your DNA To Use In Bad Economic Times
- Singapore Company DNA Dynasty Will (Not) Tell Your Children’s Future
- Preimplantation Genetic Diagnosis (PGD): A Discussion
- Family History of Disease Scares Parents More Than Genetic Test Results
- How Many Ways Can A Physician Be Sued (Over Genetic Tests)?
- Server Issues
MOST POPULAR
- DNA Toys: Ben 10 and Digimon Digivice
- 100 Facts About DNA
- Salaries for Jobs in Genetics
- Want a job? Submit your DNA
- What does DNA mean to you? #14
- What does DNA mean to you? #11
- 5 Cool Things You Can Do With Your DNA
- What does DNA mean to you? #10
- DNA Excerpt: Bringing Home the Birkin
- DNA Video: DNA Replication by The Backrow
- Rule of Thumb on Speeches About Science
11/26/2008 07:15 pm
1 Comment - Singapore Company DNA Dynasty Will (Not) Tell Your Children’s Future
11/24/2008 02:08 am
2 Comments - Analysts Say deCODE Genetics Headed for Bankruptcy Court
11/23/2008 07:34 pm
2 Comments - Singapore Biotech Sector Loses Stem Cell Researcher Alan Colman
11/22/2008 11:59 am
6 Comments - Gene Genie #18 with the PG Tips Chimp
10/23/2007 09:28 am
38 Comments - Business of DNA
- DNA @ Google Answers
- DNA and Disease
- DNA and Genealogy
- DNA and the Law
- DNA Around the World
- DNA Fun
- DNA in General
- DNA Inventions and Gadgets
- DNA Lab Talk
- DNA Podcasts and Videos
- DNA Quotes and Excerpts
- DNA Testing
- Gene Therapy
- Genetic Engineering
- Genetically Modified Foods and Organisms
- Jobs Involving DNA
- Personalities with DNA
- Polls About DNA
RECENT POSTS
RECENT COMMENTS
CATEGORIES
ARCHIVE
- November 2008
- October 2008
- September 2008
- August 2008
- July 2008
- June 2008
- May 2008
- April 2008
- March 2008
- February 2008
- January 2008
- December 2007
- November 2007
- October 2007
- September 2007
- August 2007
- July 2007
- June 2007
- May 2007
- April 2007
RANDOMIZED BLOGROLL
- HealthNex
- Suracell Inc. Blog
- ScienceRoll
- Biochemist in Exile
- Science With Me!
- Mary Meets Dolly
- Genomics Policy
- evolgen
- Aetiology
- Philosophy of Genetics
| We comply with the HONcode standard for trustworthy health information: verify here. |
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