Redefining Identity

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How do you define yourself? By gender? Race? What about sexuality, origin, or even income?

Northwestern University’s first TEDx event, “Identity,” will explore how scientific research is redefining who we think we are. Science in Society asked ancestry expert Rick Kittles, PhD, associate professor of medicine in the Division of Epidemiology and Biostatistics at the University of Illinois at Chicago (UIC); and Alice Dreger, PhD, professor of clinical medical humanities and bioethics in the Feinberg School of Medicine at Northwestern University; for previews of their talks.

Rick KittlesRick Kittles(BH) Rick, in your talk, you’ll discuss how knowledge from genetic research is challenging the notion that race and biology are “inextricably linked,” and that using race in biomedical studies can be problematic because of this. Can you tell me more about why?
(RK) Race in biomedical research has been used as a proxy for shared biology and shared environment among the so-called racial groups. That’s been problematic because, as we try to investigate risk factors for disease, it’s hard to tease apart those different components – biology and environment. So, with the movement in genetics and genomics, we’re now able to look at genetic ancestry and use that instead of race to group people in our studies. I think it’s important that we now have the technology to look beyond the social and political classifications of race and delve deeper into genetic risk based on ancestry.

(BH) You are well known for your work on the genetics of prostate cancer in African Americans. What do we know now about the genetic contribution to prostate cancer susceptibility? 

(RK)
For many of the health disparities that we know of, the bulk of them are due to social and cultural determinants, not biological, meaning that there are no clear biological differences that account for the difference in disease. But prostate cancer is one where there is a clear genetic component that accounts for the increased incidence of mortality among African Americans. We’ve been able to find several regions in the genome where there’s an increased risk in African-descent people based on higher frequency of these risk alleles (an alternate form of a gene caused by a mutation). That’s been consistently found over the last four or five years. Ultimately, this will allow us to better screen for high-risk populations, and possibly come up with better treatment targets.

(BH) You’ve also studied the potential relationship of vitamin D deficiencies to prostate cancer in African Americans – what did you find?
(RK)
For the most part, vitamin D is synthesized in the skin due to exposure to sunlight. We get very little from our diet. Individuals with darker skin make less vitamin D than do those with lighter skin. With all things being relatively equal – a light-skinned person and dark-skinned person being outside for the same amount of time – the light-skinned person would make more vitamin D. We know that vitamin D has anti-cancer benefits, and [that it] plays a role in protecting cells against not only immune response but also cancer. There have been some very interesting studies showing low vitamin D levels correlating with higher risk for prostate and colon cancer.

Alice DregerAlice Dreger(BH) Alice, in your talk, you’ll discuss how science is “dissolving the bright lines between anatomical differences” and what this might mean for a democracy that has been historically shaped by anatomical categories, like race and sex. How is science dissolving these lines?
(AD)
As we’re learning more and more about how human bodies work, traits that we used to think of as fairly simple or self-evident, like race or sex, are increasingly being understood as more complex. So, whereas in the past we thought of things like race and sex involving fairly discreet categories, as we go deeper and deeper into the human body, what we find is that these categories are not so discreet, and that there’s a whole lot of blending between types.

An interesting example beyond race and sex is age. A lot of rules in our democracy are set up based on age – voting and the draft, for example. Yet, as we look at how humans work, we have to recognize that age is a stand-in for what we really mean, which is maturity. The more we look at human maturity, the more it becomes evident that there are different kinds of maturity, and that reaching a certain age doesn’t actually guarantee that you’ve achieved a certain level of maturity, whether that be sexual maturity or military maturity or voting maturity.

Another example would be the very hot issue of gay marriage. The Defense of Marriage Act is based on the concept of men being fundamentally different from women in such a way that marriage is considered by some people to be very special, because it can only happen between this type of body and that type of body. But, as I’ll discuss in my talk, if we look at the way sex works, we find that there are a lot of people with sex anomalies, and that the discreet categories of male and female are actually very blurry around the edges. So we have to ask the question of why we think there are these solid categories, and why we’re basing something like marriage on the presumption of these categories. What is the meaning that we’re giving to anatomy when we retain these distinctions?

(BH) Much of your research and advocacy work has focused on bettering the treatment of intersex people (people born with reproductive or sexual anatomy that doesn’t seem to fit the typical definitions of female or male). What drew you to this field?

(AD)
When I was in graduate school, my dissertation director knew that I was interested in gender and science, so he suggested that I look at the history of hermaphrodites. At the time, I didn’t even know that intersex happened in humans past the embryonic stage. But as I looked, I learned that it’s actually fairly common. I started publishing historical work about intersex, and people with those body types began contacting me and asking for help with the current-day intersex rights movement. They convinced me to take a look at what was going on in the existing medical system. I was very surprised to see how outdated, ethically and scientifically, that system seemed. Then I started meeting lots of people with various kinds of sex anomalies and their stories – about how they had been hurt by the medical system intended to help them – were very moving. So I agreed to help, and I ended up becoming one of the leaders of the intersex rights movement. I’ve done this kind of advocacy work for about 15 years now.

What I’m trying to bring to the medical system is a general philosophy of how to think about these things in a way that’s more evidence based and more ethical. I focus especially on the idea of sorting out what’s “healthy” and what’s “normal,” and trying to get away from the concept that you have to be normal to be healthy. I’m also trying to get doctors to focus on what we know about psycho-social risk and medical risk, and how we can reduce that risk, instead of just assuming that being different puts you at risk, because it doesn’t for all of these conditions.

(BH) You mentioned that sex anomalies are fairly common.
(AD)
If we’re talking about children born so ambiguous that a team is called in, it’s about one in 2000 – so it’s actually quite common. If we’re talking about any kind of sex anomaly, even the kind you wouldn’t know about unless you got a special test for some reason, we’re talking about as much as one in 100. And that’s because sex is really complicated, so there are lots of different ways you can have sex anomalies. We’re not just talking about being profoundly in between male and female, but also about minor variations.

(BH) You also mentioned that the existing medical system was “ethically outdated” when you first began your advocacy work. I was surprised to learn that, until the 1990’s, the sex of intersex children was determined surgically by a physician, without fully informed input from parents. Now parents are more involved, but the debate about whether surgery on intersex infants should be done at all continues. How do you feel about the issue? And have you seen a change in the public’s perception of intersex during the past ten years?
(AD)
First, we should make one thing clear, and that’s that children can be assigned a gender as boy or girl without surgery. We’re not advocating raising children without a gender, or as a third gender; we advocate raising them as boys or girls. But you don’t need surgery to enforce that.

What we’ve seen change are particular practices. For example, doctors are much more forthcoming with information for parents and also for children as they’re growing up, and that’s been marvelous.

Doctors are also more cooperative with support groups, giving them more referrals. More children’s hospitals are also incorporating mental-health professionals on the teams. They’ve always recognized this as a mental-health issue, but instead of calling a psychologist or social worker, they’ve tended to call a surgeon. Now, they are much more actively calling child psychologists and social workers. So that’s been a big improvement.

Doctors today are less likely to sex-change a baby boy just because his penis is small. They are also much less likely to build a vagina in a girl in infancy, because they recognize it doesn’t work well and that the required manual dilations may traumatize toddlers and the parents who have to do the dilations. So now many surgeons hold off on vaginoplasties until a girl reaches puberty.

I think public knowledge about intersex has changed rapidly since about 1993, since the Intersex Society of North America formally came into existence. I think that’s partly because of the advocacy work that we’ve done, but also because that work has interested novelists and filmmakers. A good example is Jeffrey Eugenides’ book Middlesex, which won the Pulitzer Prize and was on Oprah’s Book Club. That sort of stuff has made a big different. So now, when I’m on an airplane and I talk to the person next to me about what I do, the odds are about nine in ten that the person will know what I’m talking about. When I started this work the odds were about one in 30, and that was usually only because they had a family member with some kind of sex anomaly. So we’ve made a tremendous difference in terms of public education.

But there’s still a lot of work to be done. A lot of the groups don’t adequately inform parents of what we do and don’t know; they make strong recommendations based on fear and anecdotes, rather than based on evidence.

If people want to read more, I recommend the websites of Advocates for Informed Chioce  and Accord Alliance. Both groups are in the forefront of clinical reform for children born with atypical sex.

Learn more at the TEDxNorthwesternU “Identity” event on Wednesday, December 15, at 7:00 PM on Northwestern’s Evanston campus. For more information and to register, visit the event website.

In the spirit of ideas worth spreading, TEDx is a program of local, self-organized events that bring people together to share a TED-like experience. Presented by the Center for Genetic Medicine’s Silverstein Lecture Series and Science in Society, Northwestern’s office for science outreach and public engagement.

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