Keeping Order in "the House of God"
Published in TC Today - Volume 35, No. 1
by David McKay Wilson
Vivian Ota Wang (M.Phil, ’94, Ph.D., ’95) was working as a genetic counselor in an oncology laboratory at Denver General Hospital back in the 1980s when she noticed that many Latino and Asian children were being identified for genetics consultations to rule out Down Syndrome.
The reason? Ota Wang says physicians were “over-interpreting” the normal shape of Asian people’s eyes, confusing it with the so-called “almond” eye-shape associated with individuals with Down Syndrome.
That experience was a turning point for Ota Wang and, as it turned out, for the field of genetics itself.
“I was motivated to try to make every geneticist more sensitive to issues of race, culture and physical variations within and between groups,” said Ota Wang, 49, who currently serves as Program Director of the National Human Genome Research Institute (part of the National Institutes of Health), during a recent interview in her office in Bethesda, Maryland.
In a career that has since included stints as a counseling psychologist, a geneticist and, most recently, a key federal advisor on the ethical and social debates over issues of race, genetics and uses of the human genome, Ota Wang has sought to reconcile the science of DNA with the still indefinable essence of what constitutes human individuality.
Even as research increasingly demonstrates that 99.9 percent of the human genome is the same from person to person, Ota Wang remains convinced that “that 0.1 percent is very powerful.”
In her current role, Ota Wang oversees the use of databases created by researchers working with federal grants of $500,000 or more, which have genetic and phenotype (observable characteristics) information that can potentially identify individuals.
“It’s a very basic way of being very altruistic,” says Ota Wang, who in April 2010 was awarded TC’s Distinguished Alumni Award, of her work. “It’s applied ethics—ethical research in practice.”
Ota Wang helped create that particular science policy guideline in her previous role, as NIH representative to the President’s National Science and Technology Council, a post she held during both the Bush II and Obama administrations.
“Vivian has helped clarify the constructs of race,” says Joseph Rath, senior psychologist at New York University’s Rusk Institute of Rehabilitation Medicine. “Race is something psychologists look at all the time, but we aren’t terribly clear about what we mean. It becomes even more complicated when you use constructs like race in medicine.”
While genetic research is often explosively controversial, no one disputes the power of this rapidly evolving field.
DNA samples now decide the fate of those charged with crimes—and governments increasingly have access to that information.
The sequencing of the human genome holds out the promise of personalized medicine—literally, the tailoring of therapies based on knowledge of how people are genetically predisposed to respond to different drugs, or even the proactive treatment of latent, asymptomatic conditions. In fact, people may soon be able to order up the complete sequencing of their individual genomes for less than $1,000.
Meanwhile, DNA samples from entire populations are providing researchers—and drug companies—with new therapeutic targets.
All of these advances are also fraught with dangers that pose difficult challenges for the counseling community. For example, what if a genetic test reveals something the patient wasn’t looking for? What is the counselor’s ethical obligation to disclose? Who pays for follow-up treatment? And what does a person do upon learning that he or she carries a gene that, if expressed, could cause a life-threatening disease?
“In our society, we tend to think that knowledge is power,” Ota Wang says. “But here, more knowledge can cause acute existential anxiety. It may make you feel less powerful because of the uncertainty and your inability to do anything about it.
“That’s the double-edged sword of genetic testing. The science is constantly evolving; it’s not static like people want you to believe. You are always walking a very fine line between hope and dread.”
Genetic research has also raised profound concerns about privacy. For example, the Havasupai Indians recently settled a lawsuit against the University of Arizona alleging that when the tribe gave DNA samples in hopes of learning more about its high rate of diabetes, it did not approve the university’s subsequent studies of mental illness among the Havasupai or its inquiries into the tribe’s geographic origins.
As personal genetic information increasingly becomes part of both research and routine medical care, the $700,000 settlement awarded to the Havasupai could set a precedent for resolving future contretemps.
“We have to make sure we do right by the research participants in these studies,” says Ota Wang. “They have donated something precious, a living part of themselves.”
Ota Wang herself has weighed in on questions of precisely this nature, in particular warning researchers to be cognizant of wide variations within racial groups.
In one study of the Chinese community in Denver, which includes immigrants from 56 Chinese ethnic groups, she helped the researchers narrow their focus to self-identified Han Chinese, who comprise the largest single group of ethnic Chinese. And in 2005, she sat on a U.S. Food and Drug Administration panel that evaluated the first race-based drug, BiDil—a medication for congestive heart disease that targeted African Americans. She voted against approving the medication, maintaining the scientific data did not support race-specific efficacy and labeling because those expected to benefit were people who socially identified themselves as “African Americans”—a broad label that, as Ota Wang points out, is not necessarily a good pinpoint for a person’s precise racial heritage.
The drug was approved, but Ota Wang has since worked to make those pitfalls apparent to patients.
“They were using self-inferred identity as a proxy for biological identity,” she says. “We wanted to make sure that was clear in the labeling.”
Untangling her roots
Born to a Japanese mother and a Chinese father, Ota Wang has confronted questions of race, ethnicity and identity from as far back as she can remember.
“I’d get it from everybody—they’d ask—‘So what are you? Where are you from?’” she says of her childhood in suburban Denver. “People were more curious about what they thought I should be than about who I was.”
After earning a master’s degree in genetic counseling from the University of Colorado, she came to Teachers College in 1991 to earn her doctorate in counseling psychology. Working with faculty members Roger Myers, Robert Carter and Patricia Raskin, among others, she honed her skills in policymaking as well as in group dynamics. More broadly, she became a social, behavioral and psychological scientist-in-one, delving deeply into the literature on genetics and race while conducting her own research. While at TC, she received funding from the National Society of Genetic Counselors to develop a multi-cultural genetics counseling program. She became one of the first practitioners to bring genetics into the broader field of counseling psychology.
“My professors at TC encouraged me to follow what I was passionate about,” she says. “And it has taken me a lifetime to convince psychologists and counselors that genetics is relevant.”
One major step in her efforts was an essay titled “The House of God: The Fallacy of Neutral Universalism in Medicine,” which Ota Wang published in The Handbook on Racial-Cultural Psychology and Counseling, edited by Robert Carter.
In that piece, she warns that—as much or more than other, supposedly less evidence-based disciplines—science can reflect the biases of those who wield it.
“The medical universalist tradition presumes that what is measurable reflects a universal aspect of human life,” she writes. “To this end, individuals who do not ‘fit’ along the statistical ‘neutral’ normal distribution are equated as deviant.”
Medical researchers and practitioners, who are predominantly white, consider their decision-making process “unfraught with influences of social class, religion, race and so on that are regarded as more scientifically valid,” Ota Wang asserts. Thus “the cultural values of white, American, middle-class and able-bodiedness are considered the universal normative standard” and the “dominant white culture’s general intolerance for difference is maintained.”
“That essay is the foundation of my philosophy,” Ota Wang says. “Everything I do is so driven by it.”
In another essay, “Multicultural Genetic Counseling: Then, Now, and in the 21st Century,” Ota Wang argues that genetic counseling should seek to individualize rather than homogenize—to acknowledge the idiosyncratic rather than viewing racial-cultural issues as obstacles. She urges medical and health educators to be more “overt and transparent” in discussing how people live as racial and cultural beings in a world where race and ethnicity matters.
Alluding to the provocative title of the book by the psychologist Beverly Daniel Tatum, she writes, “One must ask, if multiculturalism has been effective in serving visible racial-cultural groups, ‘Why are all the Black kids sitting together in the cafeteria?’”
Thinking small about the future
As technology changes, so does the battleground over diversity issues. Thus Ota Wang currently finds herself developing guidelines for public engagement in the National Nanotechnology Initiative, which is promoting the development of ways to use tiny particles containing as few as 100 atoms to diagnose and treat disease.
While the field holds enormous promise, it’s still in its infancy. Nano-particles have not yet been standardized, so their risks have not been quantified.
“In the nano world, we need to be proactive,” Ota Wang says. “We need to have a handle on how we deal with the field’s unpredictability and uncertainty.”
At the same time, many of the psychological issues related to risk perception in nanotechnology and nanoscale sciences are similar to those that have arisen in genetics counseling. A prospective parent who learns she has an increased risk of 3 percent of having a child with a genetic condition might find that information terrifying—or she might be reassured by the 97 percent chance that the child would not be born with that condition.
“It depends on what side of the coin you are looking at, and how you frame reality,” she says. “That’s the task confronting people in my field, and we need to be very thoughtful about doing it.”
To view a videotaped interview with Ota Wang, visit: http://bit.ly/9GZRxz.