 Okay. I wanted to thank the organizers for inviting me here today. I'm going to switch gears a little bit. I will be talking about genetics and identity, but I will be building off of a study that I've been conducting with consumers of 23andMe, the company that Joanna represents and described in an earlier session. And what I'm going to talk about is actually a good segue into the next session because I will be talking about ancestry testing in the context of health results. So as an anthropologist and someone who has been very interested in research ethics, I put this up here just to give a sense of that science and technology we know are dynamic, but that the value that we derive from that must be understood within the social and moral context. And to think about the ways in which genetics enters into the social landscape, in particular the significance of the gene in understanding how consumers, the public, takes up this type of information. And I would suggest that genetic information has the allure of specificity and technological precision. We've heard those words used over and over again today. That individuals often turn to genetic information to validate one's sense of self and predict one's future. And that perhaps most importantly, genetic information may trump other sources of information for identity formation. And ancestry, genetic ancestry testing I think really builds on this idea of discovery. I mean here we have a, this is just from African ancestry, but it talks about this answer that presumably the consumer would want to find out. And it is about this idea of self-discovery. Dorothy Nelkin talked about this a while ago, but really tries to think about how genetics might change our conceptions of family, for example, one social group. And to think about the ways in which DNA, its durability, the seemingly permanent significance of DNA may change our cultural ideas about what a family is. The summer, I've been very interested in the ways in which the media picks up on some of the genetic ancestry research. And this is from the New York Times. And it's talking about a study that was conducted by a group in California and the original papers in Plas Biology. But you'll see that the headline reads, genetics reveal Europe is one big family. And underneath it, I don't know if you can tell, but it's a picture of a group in reference to a neo-Nazi trial that's been occurring. And the article starts out by saying, from Ireland to Turkey, Europeans are all related, sharing a link with ancestors who live, who were alive just 1,000 years ago according to a new genetic study. Research by scientists in California is further evidence that neat distinctions between various European peoples are largely artificial and that they are all one big family. It goes on to talk about that recent research has focused on the shared legacy of Europeans. And this is in contrast to earlier theories that focused on differences, but alludes to how persistent ideas about racial difference continue to be a source of prejudice and violent crime. And I think this juxtaposition is an interesting one and perhaps can help us think about how genetic identity might be coming online in terms of how the public might be interpreting some of this information. Now, potentiality, I put it in the title, it's a concept that has been helpful to me in thinking about the power of genomics or genomic information and here I've tried to define it, potential defined as embedded with latent qualities that may realize future utility or revelation is often interpreted as synonymous with possibility, capability and power that suggests a potency that evokes both desire and fear over how to translate biology into promise. So for the last several years, perhaps since the Human Genome Project, the completion of the Human Genome Project, we have been talking about the type of promise that this new biology is supposed to deliver on and I think a lot of our ideas are built around this idea of potentiality and what that information can provide to us. I think, because of before I get into some of the research results from my study, I wanted to also put up Catherine Nash's quote about geneticization of identity and in particular how the interpretation of genetic knowledge might create new definitions of gender, race and relative that either reinforce reshape or perhaps challenge existing notions of collective identity and personhood and I think that's a question that perhaps we can begin to answer with the ways in which genetic information is being interpreted by the public. So in the other aspect that I wanted us to think about today is just the way in which genetic ancestry testing has been depicted at least in the past as recreational and some of the limits in thinking about that framework. Particularly I think personal genetics has primed an expectation that this is both recreation and recreation in the sense of oneself and the recovery of one's unknown ancestors and I want us to think about the different stakeholders that are involved in that process in particular thinking about the ways in which genetic ancestry involves an engagement with concepts of difference, ethnicity, race, genetic variation and what the play is in terms of that recreation or recreation using genetic information. Okay so the study is funded through the National Human Genome Research Institute, the ethical and legal and social implications program. It is what I'm presenting here is part of just one part of a study that's entitled social networking and personal genomics. One of the research questions that we were interested in is the reasons why individuals decide to purchase personal genetic testing. What do they do with it? What do they expect to get out of it? How do they interpret their results and who do they share that information with? I don't have time to go into all the details of the study but if you wanted to go to the website and learn more there's more information there. So just to give you a sense of the folks that we were speaking with, this is, I'm sorry it's really small, but the average age of the folks that we talked with and we conducted surveys and extended interviews with these individuals was around 40, early 40s, 80% identified as white, the medium income was between 50 to 100,000, over 50% had advanced degrees, 75% described their health as excellent or very good and I think this somewhat dovetails with the general population for 23andMe in terms of their consumer base. We asked them why they were getting testing and I should say that I think you heard that 23andMe offers a broad spectrum of genetic test results including ancestry, disease related risk, carrier status, drug response, genetics with respect to drug response and behavioral traits and what not. So for the folks that we spoke with, ancestry seemed to be the primary reason followed by interest in disease results and I think this quote is probably fairly emblematic of some of the reactions that people had to their ancestry results in the sense that they felt they were part of a living history and you see here, suddenly I feel like I'm living history but there's a strange feeling too because now I also feel like I'm not myself anymore, I feel like I'm just a piece of everyone else who lived in the past so that's been a real interesting sidebar in terms of identity. If anyone has some kind of ego problem, listen to this and they'll find out they're really just a compilation of many other people who live before I'm part of a team, I'm part of a worldwide team. Okay, so interesting in sense of giving perspective to one's self in terms of one's own personal history. We also asked our respondents to answer this question. We presented an individual who identifies as African American receives genetic ancestry test results that indicate that she has 0% African ancestry, 87% European and 13% Asian ancestry. I would classify her as and we gave them a bunch of choices and you'll see here that 16% said well what she said is what she is African American, 2% said Asian American, 18% European American but you'll see a lot of people said other and we were curious we allowed them to write in what they thought other what was their response and interestingly and I think this is this is emblematic of that group the first the lab probably had a mix up she really is African American but then there are other kind of more complex responses saying mixed race I don't think it's up to me to decide many people believe race is a social construct others talked about cultural identity we you know it's not about racial blood quantum we can't leave that we can leave that at the drinking fountain I would call her Eurasian and then this last one about well it depends on the context okay what we would call them what would we call this person how would we classify and I thought that was really interesting in terms of kind of the complexity in which people are taking up perhaps their their hybridity in terms of the results that they are getting back another way in which ancestry results are given back by 23 me is ancestry painting and this is this is a demo picture but it gives you a sense of the ways in which the chromosome is painted and it's painted by continental affiliation I guess Europe Asia Africa and not genotype and one response I think and I think this is also emblematic of some of the things that we were hearing from folks is this person who who talks about their European genes and and she says it's it's really it really is beautiful and she's talking about the ancestry painting I showed my family all the different parts of my genes that came from Africa I noticed that on one of the chromosomes well it seems a large region anyway anyway I mean it extends further than other parts is European and I was thinking I wish I could find out what those European genes do I think that I understand why I have European genes in me given my history and all but what do they do so it's interesting to me that this seems to be an example of the viewing of a racial category onto a chromosomal segment and this idea that functionality should somehow be part of that and I think we should be attuned to the ways in which people perhaps are conflating some of these ideas about race genes and and what do they do and here I just I remind us of Troy Duster's work and his around the reification of race and he he he advises us to think about the fallacy of misplaced concreteness and I think that's particularly helpful in in this context where there is a tendency to assume that categories of thought coincide with the object character of the empirical world that we take them for granted for being something that perhaps is meant to be a heuristic okay so I'm just going to describe one person story with her genetic ancestry testing her family's experience as an illustration I think of kind of the limits of recreation thinking about genetic ancestry is only recreation and so in the spring of 2010 I met Helen who's a mother of three and she she was very interested in genetic ancestry testing she chose 23 and me because she says that she felt that it was it was filled with happy colors quote straightforward information non-threatening presentation of results and so she was interested primarily in genealogy but she also thought that the health results that they were that she was going to get back was an added bonus so when we sat down to talk to her when I sat down to talk to her about her results she said she summarized them as you know I my results are fairly benign I didn't have much information in terms of disease risk that was remarkable she in fact somewhat dismissed her results but was most interested in her ancestry information but they failed to show the specificity that she assumed would that she would receive she would describe her results as pretty much 100% European and she was not surprised that her maternal haplotype originated in central Europe but she was hoping that her genetic results would settle a long time argument she had with her sister about the exact location of their quote family village she was disappointed that her results did not provide an answer okay so a few weeks later I meet Helen again and I'm I learn that she has decided to buy her daughter who's a high school senior a 23 me kit for her birthday and the reason why is she thinks that it would be a rare opportunity to teach her daughter some genetics and to give her a chance to discover her genetic ancestry she thought this was particularly relevant for her family she explained that that she was a typical white American married to a man who was born in China so her her children were mixed and her hope was that genetic testing would give her daughter some quote fun in discovering her mixed heritage heritage and give her a sense of who she is and quote what also appealed to her was the ability to test her child in the privacy of DTC personal genetic testing where they're they they would receive their results and no one else had needed to know about them she also it was was attracted to this fun mode of self-discovery so three months later she told me that her daughter who was tested received her results and when I asked her how things turned out she said things haven't turned out like she thought they would she talks about how they had decided beforehand that Helen the mother would have the password and she would log in for the results first to make sure that there wasn't anything that she should be concerned about which she did and she didn't find anything but then she said when she gave the password to her daughter she she was surprised and she says sorry I'm gonna skip these at first I thought we were fine nothing jumped out at me and you know from the list with all of the red arrows I thought few what a relief and she's talking here about her health information her health disease risk information but then she and she's referring to a daughter came to me really upset later that day actually she was in tears and pulled me over to the screen and pointed at her results it was her Parkinson's page and it said that she was almost three times the risk of the average person I was really confused because I hadn't seen this before and I knew I wouldn't have missed something like this I thought I had I thought had they updated her results and then I realized what she had done she had clicked on Asian so the the option that you have in some of these in this company is that you do at the and you you are asked to identify yourself and when Sarah sorry Helen originally looked at her daughter's results she had assumed that the daughter would characterize herself as European but what the daughter had done has gone in and it clicked on Asian and it changed her results and which is interesting because of the idea that that on the one hand there is this this this notion that we can create and profess our own identity but it can when it rubs up against a history I would say of using race as the major prism in biomedical research and in clinical medicine we come back to these big categories and I think that this is something that we should should be mindful of as we think about genetic ancestry testing and the way in which it travels so just in summary I would suggest that genetic explanations of difference are powerful narratives for identity formation and that in interpreting genetic data we must be mindful of the confounding and conflation of genes ancestry race and disease how difference is that how difference is imbued with meaning depends on the social context and historical framings and that it's important to understand the allure of genetic specificity in what Nelkin and Lindy have described as the DNA mystique and the illusion of precision and certainty when we think about this idea of creating oneself discovering oneself and being able to define oneself and I'll just end there I was told that we're not going to have time for questions so what we'll do we're taking a break we will stay up here and people who want to talk to us will be right here okay and then the next session we will pick this up with the notion of genetics and health thank you very much 15 minutes