Might as Well Bare It All

I think Esther Dyson is great and I respect many of the people involved in these public-personal genome projects. But I am not convinced that having names and faces associated with this information is going to really help the science/medicine side of things. What would be so wrong with removing the names from the records but still releasing all the medical information? I think this would remove some potential bias from the analysis (after all, I know some people who would greatly prefer to find certain alleles in Watson but not Venter, or vice versa).

Names and faces may not necessarily help with science/medicine aspects of personal genomics, I agree. However, there are significant ELSI aspects of personal genomics that may greatly benefit from having people openly speak about their experiences related to being sequenced. Open discussion requires a name and face. We wouldn't have the opportunity to hear from Esther if this weren't the case.

Yes, sure, having Ester and others talk about it is fine. But again, if I am part of a clinical trial I can talk about (even if I may not be able to get data on myself). Just because you talk about it does not mean your name has to be officially linked to the data. This is the part that I find to be somewhat silly.

Unlinking a person's name from a their DNA data is definitely one option and it sounds as though you would be personally more open to participation based on this model. There are significant reasons to believe that promising anonymity to participants in genomic research studies would be extremely difficult to uphold over the long-term, and impossible to guarantee: http://arep.med.harvard.edu/PGP/Anon.htm The difficulty of maintaining anonymity is especially true now that we are in the early days of genome sequencing. For example, if a human genome sequence were to appear in GenBank tomorrow bearing two X chromosomes, even if the data didn't have Esther's name on it, the chances that the genome is hers would be pretty good. To maintain her anonymity, she might choose not to let anyone know that she has been sequenced, but then the public would loose the opportunity to learn about her experiences. An informed consent process that does not promise anonymity seems reasonable to me. Don't you agree?

No - I am being unclear. I am not suggesting anonymity or promising it at all. All I am saying is that when people examine the data, they will inevitably be biased if they personally know the person involved. This bias may be helpful in some cases but it will also be detrimental in others. For example, if you did an analysis of some gene you thought was involved in antisocial behavior and the people that came up positive were people you thought were not antisocial (even if they scored highly on some test for antisociality) you might ignore the results. I am worried about the SCIENCE being harmed by personally knowing the subjects of the research. And I am worried about when the results are published or released, the interpretation will inevitably be affected by what other people think of the subjects. So all I am saying is that we avoid mentioning the names of the people in the databases and the studies, even if it would be easy for an interested party to figure things out.

Ahhh, I see your point. Yes a very fair point I think. Reducing bias during scientific analysis of large genome/phenome datasets no doubt will be important. Thanks.

One follow-on comment, which is really my take-away from the above discussion: Scientists may choose to permit certain biases in a study, whether they be names, faces, height, age, socioeconomic status, gender, or X (insert your favorite bias)... ...but what we need is not to hide from these biases, but to prevent them where possible and/or study them. Thanks.

It's one thing to consider these matters dispassionately, quite another to subject yourself to them directly. For that I have the highest regard for PGP participants (which is expanding enrollment in September, btw). As a bioinformatician in a high-throughput genotyping lab, I often find myself in the midst of these discussions. I wanted to understand what it's like at the other end of the sample processing pipeline, so I volunteered for a similar NIH-sponsored sequencing project. I'm here to tell you that it's a whole 'nother matter when the discussion is about your genome, your family and your future. But I want to know because I really do believe that knowledge is power. Ironically, when I met with a genetic counselor for my intake interview, the one question she wasn't prepared with an answer for was: what happens when I ask for my sequence? how are they going to provide it and under what conditions? I may be unusual in that I want it and know what to do with it, but they're definitely gonna have to think about it as long and hard as they thought about the many other thorny issues surrounding medical sequencing.

"It's one thing to consider these matters dispassionately, quite another to subject yourself to them directly." For this reason, I hope we can get some public policy folks to volunteer. All stakeholders for that matter, but public policy especially (making rules for *other* people to abide by is just too easy).