As promised (or warned--I guess it depends on whether you think this is an interesting issue), here is another thing to think about with regard to genetic biobanking studies.
So: say you've agreed to participate in a research study that is trying to identify whether there is a genetic contribution to breast cancer. In this particular study, the researchers will follow a cohort of women who have not developed breast cancer at the time of enrollment. The researchers will take blood samples and do physical exams periodically. They will also sequence your DNA. As time goes on, some number of women in the study cohort will develop breast cancer, and some won't. The researchers will look at the DNA sequences to see whether there are different patterns in the genetics of the women who develop cancer as compared with those who don't. If they find such patterns, they'll go on to investigate what those specific mutations do.
This kind of research, which is called a genome-wide association study, GWAS for short--because it's looking for associations between genetic patterns and disease--is a lot like a fishing expedition. (You can learn more about these studies in this archived Science Friday audio panel with Ira Flatow.) How GWAS's work has a couple of important implications. One is that, for such studies to work at all, researchers need really big datasets to sift through. Another is that the same dataset could be used for lots of different purposes.
For these reasons, and for efficiency and cost-effectiveness reasons as well, the National Human Genome Research Institute (NHGRI) is trying to develop plans to pool or share such datasets across different projects.
Think back to our breast cancer study example. If you'd consented to participate in that study at your local research university, how would you feel about your (de-identified) information being used by researchers somewhere else? Would you feel that you needed to be offered the chance to opt out of this "wide data sharing?" Or would you feel that your original consent covered such subsequent uses?
Here's another permutation to think about. Say the researchers did the breast cancer study, and in the course of that work they noticed that there seemed to be a correlation between certain genetic patterns and alcoholism or schizophrenia. Would it be ok with you for them to pursue this line of inquiry using your genetic information? Would you feel that you needed to be offered the chance to opt out?
You can read about the NHGRI policy, and the scientific community's reaction, in The Scientist, here. Salon.com ran an article a few years ago about a much smaller open-source approach to genetics, here (which is where the nifty kitty photo came from).
3 comments:
I think all people whose DNA is included in studies should be co-authors! In Physics, there are papers with 100's of authors, and one can always put the complete author list in the supporting information, so there is no reason not to do this.
Interesting comment, esp in light of recent debates about authorship standards. In general, if there's any recognition of research subjects' contribution in published reports, it's in the form of an acknowledgment.
Technically, and under most journal and ethics guidelines, individuals are to be named as authors only if they have made substantial intellectual contributions to study design or interepretation...ie, not for providing raw materials, whether reagents or (as in this case) biological specimens. Also, fwiw, courtesy authorship and ghost authorship are supposedly prohibited.
At the same time, though, evolving approaches to research (such as community-based participatory research and participatory action research) are placing a much higher value on the part research subjects play in the whole process--to the point of saying that researchers need to fairly share funds with communities in which research is done, involve community members in analysis and writing, and build research and other capacities within the communities. So maybe what you have in mind, Anonymous, is something more along these lines?
This reminds me of people screening their babies before hand to see if they will have mental retardation or some other health problems. It seems like we want to play god but whenever we do we pay the price.
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