Consuming Genetic Ancestry – Sandra Soo-Jin Lee

Sandra Soo-Jin Lee:
Okay. I wanted to thank the organizers for inviting me here today. I am 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’s
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. 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. And Dorothy Nelkin talked
about this a while ago, but really tries to think about how genetics might change our
conception 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 suburb — 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 paper is in PLoS 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 off 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 this 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
continued 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 both evokes 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 before I get into some of the research
results from my study, I wanted to also put up Katherine 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 in personhood. And I think that 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 — and the other aspect 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 re-creation 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, ethnicities, race, genetic variation, and
what the play is in terms of that recreation or re-creation 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. Eighty percent identified as white. The medium income
was between $50,000 to $100,000. Over 50 percent had advanced degrees. Seventy-five percent
described their health as excellent or very good. And I think that 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 whatnot. 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 can see here, “Suddenly I
feel like I’m living — 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 lived 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 and receives genetic ancestry
test results that indicate that she has zero percent African ancestry, 87 percent European,
and 13 percent Asian ancestry. “I would classify her as,” and we gave them a bunch of choices.
And you’ll see here that 16 percent said “Well, what she said is what she is, African-American.”
Two percent said Asian-American, 18 percent 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. [laughter] And interestingly — and I think this is emblematic
of that group. The first, “The lab probably had a mix-up, she probably is African-American.”
But then there were 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, 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 we would call this person, how would we classify them. And I thought that
was really interesting in terms of kind of the complexity in which people are taking
up, perhaps, their hybridity in terms of the results that they are getting back. Another way in which ancestry results are
given back by 23andMe 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 then not genotyped. 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 talks about their European genes. And
she says — 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, 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 imbuing 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 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 advises us to think about the
fallacy of misplaced concreteness. And I think that’s particularly helpful 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’s
story with her genetic ancestry test and her family’s experience as an illustration, I
think, of kind of the limits of recreation — thinking about genetic ancestry as 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 23andMe because she says
that she felt that 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,
“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 that
she would receive. She described her results as pretty much 100 percent 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 learn that she has decided to buy her daughter, who’s a high school senior, a 23andMe
kit for her birthday. And the reason why is she thinks it will 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 she was
a typical white American married to a man who was born in China, so her children were
mixed, and her hope was that genetic testing would give her daughter some, quote, “fun
in discovering her mixed heritage, and give her a sense of who she is,” end quote. What
also appealed to her was the ability to test her child in the privacy of DTC personal genetic
testing, where they would receive their results and no one else had — needed to know about
them. She also 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 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 was surprised. And she says — sorry, I’m going to skip these
— “At first I thought we were fine, nothing jumped out at me, and, and you know, from
the list with all of the red arrows, I thought, phew, 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 her 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 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 option that you have in some of these
— in this company is that you do at the — 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 was gone in
and clicked on Asian, and it changed her results, which is interesting because of the idea that,
on the one hand, there is 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 we 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 Lindee have described as the DNA mystique, and the
allusion of precision and certainty when we think about this idea of trading oneself,
discovering oneself, and being able to define oneself. And I’ll just end there. [applause] Yolanda Moses:
I was told that we’re not going to have time for questions. Sandra Soo-Jin Lee:
Oh, okay. Yolanda Moses:
So what we’ll do, we’re taking a break. We will stay up here, and people who want to
talk to us, we’ll 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. [applause] Fifteen minutes.

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