This is the second post in Bill of Health‘s symposium on the Law, Ethics, and Science and Re-Identification Demonstrations. We’ll have more contributions throughout the week, and extending at least into early next week. Background on the symposium is here. You can call up all of the symposium contributions by clicking here (or by clicking on the “Re-Identification Symposium” category link at the bottom of any symposium post).
Please note that Bill of Health continues to have problems receiving some comments. If you post a comment to any symposium piece and do not see it within half an hour or so, please email your comment to me at mmeyer @ law.harvard.edu and I will post it. —MM
By Jen Wagner, J.D., Ph.D.
Before I actually discuss my thoughts on the re-identification demonstrations, I think it would be useful to provide a brief background on my perspective.
My genome is an identifier. It can be used in lieu of my name, my visible appearance, or my fingerprints to describe me sufficiently for legal purposes (e.g. a “Jane Doe” search or arrest warrant specifying my genomic sequence). Nevertheless, my genome is not me. It is not the gist of who I am –past, present or future. In other words, I do not believe in genetic essentialism.
My genome is not my identity, though it contributes to my identity in varying ways (directly and indirectly; consciously and subconsciously; discretely and continuously). Not every individual defines his/her self the way I do. There are genomophobes who may shape their identity in the absence of their genomic information and even in denial of and/or contradiction to their genomic information. Likewise, there are genomophiles who may shape their identity with considerable emphasis on their genomic information, in the absence of non-genetic information and even in denial of and/or contradiction to their non-genetic information (such as genealogies and origin beliefs).
My genome can tell you probabilistic information about me, such as my superficial appearance, health conditions, and ancestry. But it won’t tell you how my phenotypes have developed over my lifetime or how they may have been altered (e.g. the health benefits I noticed when I became vegetarian, the scar I earned when I was a kid, or the dyes used to hide the grey hairs that seem proportional to time spent on the academic job market). I do not believe in genetic determinism. My genomic data is of little research value without me (i.e. a willing, able, and honest participant), my phenotypic information (e.g. anthropometric data and health status), and my environmental information (e.g. data about my residence, community, life exposures, etc). Quite simply, I make my genomic data valuable.
As a PGP participant, I did not detach my name from the genetic data I uploaded into my profile. In many ways, I feel that the value of my data is maximized and the integrity of my data is better ensured when my data is humanized.