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.