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http://chronicle.com/article/Welcome-Freshmen-DNA-Swabs/65729/?sid=at&utm_source=at&utm_medium=en
Welcome, Freshmen. DNA Swabs, Please.
[image: Duster Art]

By Tim Foley for The Chronicle Review
Enlarge Image<http://chronicle.com/article/Welcome-Freshmen-DNA-Swabs/65729/?sid=at&utm_source=at&utm_medium=en#>

By Troy Duster

When the University of California at Berkeley announced a project that asks
incoming freshmen for the fall of 2010 to voluntarily submit their DNA for
genetic testing, the plan quickly garnered national attention and generated
heated debate. *The New York Times*carried its account in the May 19 issue
—and within 24 hours the Center for Genetics and Society (on the West Coast)
and the Council for Responsible Genetics (on the East Coast) called for a
halt to the project.

One of the plan's sponsors, Mark Schlissel, Berkeley's dean of biological
sciences, said he has been surprised by the furor and negative response from
some quarters. Schlissel noted that the project had been cleared by the
campus institutional review board that assesses risks and benefits to human
subjects. After having their DNA analyzed, the incoming students would be
given information about three areas of their genetic code that would inform
them of their tolerance for alcohol, lactose (in milk), and possible need
for folic acid (in leafy greens). The Web site announcing the project
proudly proclaimed that "the information Berkeley students will glean from
their genetic analysis can only lead to positive outcomes." (According to a
recent article at Genome Web, both Stanford and Duke Universities are
considering even larger projects with their students.)

Why has this seemingly benign educational and health project become
controversial? The answer lies in a better understanding of the social
context in which human genetic research is carried out. Direct-to-consumer
genetic testing, to which this project is tied, was begun on hotly contested
terrain. In the early years, protocols required a genetic counselor or a
physician to interpret test results for patients and consumers. In recent
years, ancestry testing companies have proliferated, unregulated, often
providing wildly conflicting answers about "origins". When it comes to
informing subjects about their potential health risks, the terrain is even
more controversial. The California Department of Public Health actually
stepped in to caution companies to stop short of even seeming to provide
implicit medical analysis and advice. Bear in mind that those cases involved
consumers who themselves initiated and then voluntarily submitted their DNA
samples.

The House of Representatives Energy and Commerce Committee is investigating
the claims made by consumer-genetic-testing companies. And as the Council
for Responsible Genetics put it in a letter to Berkeley administrators:

"The American Medical Association, the American Society for Human Genetics,
and the American Clinical Laboratory Association have all issued strong
statements against direct-to-consumer genetic testing and recommended that a
genetics expert be involved in ordering and interpreting genetic tests,
consumers be made fully aware of the capabilities of genetic tests, the
scientific evidence on which tests are based be available and stated so that
the consumer can understand it, the laboratories conducting the tests be
accredited, and consumers be made aware of privacy issues associated with
genetic testing."

The UC Berkeley DNA project is being promoted with the explicit goal of
introducing students to a future of personalized medicine, via the analysis
of an individual's genes. But one of the most important things we have
learned in the last two decades of human molecular genetics is that there is
high variability in the clinical expression of even single genes. In lay
terms, this means that two people with the same genetic structure can and
often do have very different manifestations of the phenomenon under
investigation. Two subjects with the identical delta F508 gene for cystic
fibrosis can have remarkably different outcomes—one with relatively mild
symptoms, the other with debilitating lung problems requiring continuous
medical treatment. The same is true for sickle-cell anemia and many other
genetic conditions. That means that there are important environmental
triggers that can cause the gene to express itself in different ways.

Two people with the same genetic variant can and do have different triggers
that shape differential expressions as phenotype. Even a sophisticated and
well-read human subject getting the results of a scientific project from a
university-approved lab is likely to treat this information not as a complex
interactive feedback loop but as a personalized finding of a level of
susceptibility. The person could well be motivated to act upon this
apparently precise information by reorienting his or her behavior in a
certain direction. A planned public lecture by research scientists to
explain the findings is hardly a substitute for personalized interpretation
from a clinician or a genetic counselor.

Another problem with the project is that it violates the well-established
principle of protecting human subjects, namely, by ignoring or trivializing
the power/status relationship between the subject of the research and those
in charge of the project. More than a half-century of case law has drawn
attention to extreme cases, such as research on imprisoned subjects and
prisoners of war. But the continuum is long, and far more subtle cases are
also covered, as when employers ask employees or lab assistants to
participate as research subjects; when professors ask their students to
participate; or when doctors ask their patients to enroll in studies with
which the doctors are associated or from which they receive compensation.
When refusal to participate can have the effect of an increased sense of
vulnerability, institutional review boards have routinely flashed a red
light.

The Berkeley project falls into this category. Not only are incoming
students being asked by faculty members and administrators to participate,
but a decision to decline also means that they will not be on the same
proverbial page as their fellow students who do participate. In this
situation, there is subtle social coercion in the underlying scaffolding of
the decision. Moreover, just to underscore the links, the announcement
informs students that, among "alternatives to participation," they are free
to seek out similar information from private companies such as 23andMe.

Then there is yet another problem. The project announcement acknowledges a
1-percent error rate for such tests. Assuming that 3,000 of the 5,500
incoming students take the test (x 3 would be 9,000 tests), 90 tests would
be incorrect, but because data will be anonymized (only the individual
tested will have the matching bar code) no one will know whose results are
erroneous, not even the lab technicians. One of the ethical dilemmas of
research on human subjects is that while anonymization of samples prevents
breaches of privacy or unauthorized use of the data, it also prevents
follow-up counseling or notification.

There is a strong tendency for molecular geneticists to reduce attitudes
toward the world of science into the binary of "for" or "against." That
leaves little room for nuanced, engaged critiques.

In the late 1990s, I served as a member of the National Advisory Council to
the Human Genome Project and later chaired its Ethical, Legal, and Social
Issues Advisory Group. In that capacity, I attended a large national
conference in Washington of scientists and policy makers. At one point, a
scientist brought the house down with laughter and prolonged applause when
he said from the podium something like this: By 2010, when all the Ethical,
Legal, and Social Issues people have gotten out of our way, we will have
better understood and solved a host of human genetic disorders, provided
therapies for them, and harmed no human subjects along the way.

In the early 1990s, articles filled the scientific literature and spilled
into the mass media about the discovery of "the gay gene" and then "the
obesity gene" and then "the violence gene." In all those cases, pundits
predicted the application of this new knowledge to daily life. There was
deafening silence from leading geneticists, who should have cautioned the
public that these discoveries wouldn't simply and quickly revolutionize
policy and practices regarding obesity or violent crimes. Other members of
the academic community did counsel caution and suggested integrated
approaches to better understand complex behavioral outcomes. It is now
common knowledge that reductionist notions of "the gene for" this or that
have been almost completely abandoned in favor of a more modest, nuanced
understanding of emerging fields of epigenetics and proteomics.

A recent well-publicized ruling on the use of genetic tests highlights the
minefields of ethical and legal issues in how genetic tests are used and
reported. The Havasupai Indians of Arizona have just received a favorable
settlement in their suit against Arizona State University. Scientists had
given tribal members the impression that their genetic research centered on
susceptibility to diabetes. While some subjects had signed a rather vague
consent form that included language covering "other behavioral problems"—the
overwhelming majority believed that the work on their stored blood samples
would help in their struggles with widespread diabetes. The institutional
review board of Arizona State University had approved the research
project—even though the researchers were looking at genetic susceptibility
for schizophrenia and working on genetic information about migration
patterns.

I do not mean to imply that the current Berkeley project has any semblance
of a relationship to the Havasupai story on matters of consent, save for
where I began: The social context of research on people is delicate. As
Schlissel, the Berkeley dean, has acknowledged, we need a full-scale
exploration of the scientific and social issues surrounding such research,
but we need it long before gene tests are offered to students.

Might a Berkeley freshman get a false understanding of his or her reaction
to alcohol, or intolerance for milk, or need for kale? Well, possibly, but
that is not the main point. Rather, the substantial intellectual risk is
that they'll be institutionally introduced into misunderstanding the
precision, interpretation, and historically problematic execution of such
research, and the subtle, unexamined undercurrent of coercion in their
participation. Until students have a firm comprehension of all those
aspects, such projects shouldn't be planned.

Stanford, Duke, and other universities, take note: There are far more
sensible and effective ways of introducing incoming students to their
classmates and to their college.

*Troy Duster is a professor of sociology at New York University and
Chancellor's Professor at the University of California at Berkeley. His
books include *Backdoor to Eugenics *(second edition, Routledge, 2003).*
*
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Michael Balter
Contributing Correspondent, Science
Adjunct Professor of Journalism,
New York University

Email:  [log in to unmask]
Web:    michaelbalter.com
NYU:    journalism.nyu.edu/faculty/balter.html
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