April 22, 1998
Jewish Concern Grows as Scientists Deepen Studies of
By SHERYL GAY STOLBERG
a snowy night in January 1996, a handful of Boston
scientists convened some of the city's most prominent
Jews for a quiet, off-the-record briefing. Over
sandwiches and cookies, the rabbis and leaders of Jewish
groups learned of the latest research on a breast cancer
gene that occurs with startling frequency in American
Jews of central and eastern European descent.
Then Dr. Judy Garber, a breast cancer researcher at
the Dana-Farber Cancer Institute, posed a question to the
guests: Would their organizations cooperate in future
studies of this gene and its implications for these Jews,
called Ashkenazis, and their families?
To Dr. Garber's surprise, the answer was a polite but
"The feeling was, 'Why us?"' said a guest,
Nancy Kaufman, executive director of the Jewish Community
Relations Council of Greater Boston. "There was
concern about targeting Jewish women, of making this
appear that this is a Jewish issue when it isn't."
Over the past few years, that concern has mushroomed,
as scientists have become acutely interested in the
genetic idiosyncrasies of Ashkenazi Jews. That is not
because these Jews have more defective DNA than any other
ethnic group -- they do not. Nor is it because Ashkenazis
in general have higher rates of hereditary disease than
other groups -- they do not. Rather, centuries of living
and marrying within the confines of ghettoes have
produced a relatively homogenous population in which tiny
genetic alterations, or mutations, that cause disease are
easy to find.
While other isolated populations, most notably the
Amish, the American Indians, Finns and Icelanders, are
being studied with similar intensity, perhaps no group is
as conflicted about its role as study subjects as the
Jews. The reason is obvious: No other group carries the
psychological scars of the Holocaust, a calculated
extermination attempt rooted in the notion that Jews were
"There is a historical context to this that I
don't think you can ignore," said Dr. Michael
Grodin, a professor of Jewish law and medicine at Boston
University, who has written extensively on Nazi Germany.
"People are anxious."
"We are getting a bad reputation," said
Rabbi Moshe David Tendler, who teaches medical ethics at
Yeshiva University in Manhattan. "All the bad genes
you talk about are Jewish genes. Why? Because we have a
wonderful genetic population to study, and so everybody
heads for the Ashkenazi Jew. It's like a gold mine."
Indeed, Ashkenazis, whose ancestors are from Central
and Eastern Europe and who make up 90 percent of the six
million Jews living in the United States, have
contributed greatly to scientific understanding of the
way genes influence disease in Jews and non-Jews alike.
Each new study, it seems, begets another. Researchers
studying two known breast cancer genes have identified
three specific mutations common to Ashkenazis; these
mutations are also linked to ovarian and prostate cancer.
Last year, scientists searching for a gene for colon
cancer accidentally found it in Ashkenazi Jews.
The inquiry is not limited to cancer. At Johns Hopkins
University in Baltimore, geneticists are now struggling
to recruit Ashkenazis in an effort to pinpoint the genes
for two inherited mental disorders, schizophrenia and
manic depression. At Stanford University, an examination
of autism in Ashkenazi families is under way.
Proponents of such studies, including some Jewish
geneticists who are conducting them, contend that they
can only be a boon for Jews, giving them early access to
genetic testing and, eventually, treatment. But others
fear that the studies will leave Jews vulnerable to
discrimination by employers and insurance companies, and
they worry that as more discoveries make the news, the
public will be left with the impression of Jews as
Even the research lexicon makes some Jews cringe; who,
after all, wants to hear themselves described as carrying
genetic defects or mutant genes? "The use of the
word mutation gets to our very soul," said Karen
Rothenberg, a law professor at the University of Maryland
who is studying the effects of genetic research on Jews.
"It's the whole question of stigma and our own view
The subject strikes such a sensitive chord that
Hadassah, the Jewish women's organization, is sponsoring
a Jewish Leadership Meeting on Genetics on Wednesday in
Washington, where top officials of the National
Institutes of Health will discuss genetic research with
30 of the nation's most distinguished rabbis and leaders
of Jewish groups.
"I don't think there is an overreaction going on
here," said Dr. Francis Collins, director of the
National Human Genome Research Institute and a featured
speaker at the meeting. He added that all people --
regardless of ancestry -- are "walking around with
somewhere between 5 and 50 rather significant glitches in
But few people understand what those glitches mean,
said Amy Rutkin, Hadassah's director of American affairs,
or how often they occur. For instance, current estimates
are that the so-called Jewish mutations in genes known to
cause breast cancer appear in 2.3 percent of Ashkenazi
women and that 6 percent of Ashkenazis carry the colon
Those percentages are high, but not nearly as high, Ms.
Rutkin said, as some Jews mistakenly believe. By
comparison, the colon cancer gene has not been found in
any non-Jews; fewer than 1 percent of non-Jews carry a
mutated breast cancer gene.
Ms. Rutkin says that anxiety is so intense that she
worries that just raising the topic of genetics and Jews
will "fan the flames of fear." But Hadassah
wants to see the genetic studies continue. "We
cannot bury our heads in the sand," Ms. Rutkin said.
The ambivalence is so widespread that academics are
beginning to study it. Two years ago, Dr. Kathryn Taylor,
a medical sociologist at York University in Toronto,
asked 20 Jewish families their opinions on the breast
cancer research. Half said their families welcomed it,
while the other half said they felt victimized by it.
Those conflicting feelings are creating tension among
Jews who, on the whole, are "very pro-science,"
said Grodin, the Boston University ethicist.
As far back as the Middle Ages, some of the greatest
Jewish scholars were also doctors, among them Moses
Maimonides, the renowned interpreter of Jewish law. The
notion that health is paramount is deeply rooted in
Judaism; the mandate to fast on Yom Kippur, for instance,
is lifted when someone is sick. And Jews consider it a
moral obligation to advance scientific knowledge, he
said, in keeping with what Ms. Rutkin called the ideal of
tikkun olam -- doing justice to repair the world.
In fact, many of the scientists who are conducting the
current wave of genetics research are themselves
Ashkenazi Jews. Among them is Dr. Bert Vogelstein, a
professor of oncology at Johns Hopkins School of
Medicine, who discovered the colon cancer gene. He comes
from a long line of rabbis -- 13 generations of them, a
family tradition that ended with Vogelstein's father.
Being Jewish, Vogelstein said, helped him make his
discovery. When two patients turned up with the same
genetic alterations, he said, "I noticed, just by
looking at their names, that they were both likely to be
Ashkenazi. In a sense, that's my family."
That notion -- the idea of studying one's family -- is
driving some scientists to select Jews as their study
subjects. Among them is Ann Pulver, associate professor
of psychiatry at Johns Hopkins, who is focusing on
Ashkenazis for her study of schizophrenia and manic
depression, even though there is no evidence these
disorders occur with greater frequency in Jews.
"There are many genetically homogenous
populations to study," Dr. Pulver said. "But I
myself am an Ashkenazi Jew. I think this is a great
advantage to the Jewish community."
For scientists who are not Jewish, however, studying
Jews is a delicate endeavor. "It's been stressful,"
acknowledged Dr. Jeff Struewing, a genetic epidemiologist
at the National Cancer Institute. Two years ago,
Struewing recruited 5,318 Ashkenazi men and women in the
Washington area for the first large-scale effort to
assess the prevalence of breast cancer mutations among
So Struewing, who said he knew few Jews and little
about Judaism, formed a committee that included rabbis to
guide his research. "They kept me from putting my
foot in my mouth," he said. They also spread the
word to their congregants; in nine weeks, Struewing's
study was full. His work, published last May, was cited
as an example of how to conduct culturally sensitive
research. But Ms. Rothenberg, the Maryland law professor,
said Jews had become more wary of late. Today, she said,
"I'm not sure it would be as easy to get such quick
The breast cancer study was not the first time Jews
participated in mass testing for a hereditary disorder.
Since the early 1970s, pregnant Jewish women have been
routinely tested for Tay-Sachs disease, a fatal
neurological illness that kills children when they are
toddlers. The disease occurs when a child is born to two
parents who carry the Tay-Sachs gene. The majority of
cases, 85 percent, occur in Ashkenazi Jews.
Professor Rothenberg describes Tay-Sachs testing as
"the era of positive genetics" for Jews, most
of whom view screening as a mitzvah, or good deed. But
she and others note that there is an important difference
between screening for Tay-Sachs and diseases like breast
cancer: Unlike Tay-Sachs, breast cancer cannot be
prevented, leaving some Jews -- and many non-Jews --
debating whether testing does more harm than good.
Among the skeptics is Rabbi Joseph Ekstein, who in
1983 founded a Tay-Sachs testing program in the
Williamsburg section of Brooklyn. Among the Orthodox, who
place a high value on marrying into a healthy family,
screening for a disease that has no treatment could
create a class of unmarriageable women, he said.
"What is the advantage?" the rabbi asked.
"It is just making more tragedy."
On the other end of the spectrum is Dr. Joseph
Schulman, founder of the Genetics and IVF Institute in
Fairfax, Va., one of the largest genetic testing centers
in the nation. His wife recently tested positive for a
mutated breast cancer gene, and had her breasts and
ovaries removed as a preventive measure. Schulman
believes the testing may have saved his wife's life.
"This is obviously of great value to Jews," he
As the debate continues, some Jewish organizations,
including Ms. Kaufman's group in Boston, have begun
pressing their state legislators, as well as Congress, to
adopt laws prohibiting genetic discrimination in
employment and insurance.
Rabbi Tendler, the ethicist at Yeshiva University,
said he would discourage Jews from participating in
research or genetic testing until protections are passed.
"There's so much promise that I always walk gingerly
when it means holding back any aspect of research,"
he said. "Yet, you have to weigh the risk against