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669— 2CD11 CD
106 Detroit Jewish News
Ch ild r e n's
it e s s Programs
• Free Consultation
(248) 855-0345
Health
Deafness Discovery
Raises Ethical Issues
MICA SCHNEIDER
Special to The Jewish News
Washington (JTA)
new medical finding regard-
ing a genetic mutation that
causes deafness among
Ashkenazi Jews is raising
several practical — and ethical —
implications for the Jewish community.
The research, published in the
Nov. 19 issue of the New England
Journal of Medicine, shows that a
recessive gene found in 4 percent of
all Ashkenazi Jews is likely to be a
source of hereditary deafness.
Those carrying the mutation in the
connexin 26 gene, which can produce
a protein that causes hearing loss,
may not suffer hearing loss them-
selves. But when paired with another
carrier, they could parent a deaf child,
researchers said.
The researchers stress the study's
findings should not be a cause for
alarm in the Jewish community, but
rather a step toward understanding
more about a condition that affects
about 1 in 1,000 Jews, the same as in
the general population.
"The frequency of deafness is no
higher in the Jewish population than
in others," said Dr. Bronya Keats,
director of the Molecular and Human
Genetic Center at the Louisiana State
University Medical Center in New
Orleans and research coordinator for
the project. "It's just that in the
(Ashkenazi) Jewish population, many-
profound hearing impairments are
due to a certain gene mutation."
Despite this fact, some Jews fear that
discovery of the gene within their
families could lead employers and
health insurance companies to deny
them medical coverage on the basis of
having a pre-existing condition.
Keats cited problems encountered
in recent years by women who wished
to be screened for the BRCA 1 and
BRCA 2 gene mutations, which occur
at a higher rate among Ashkenazi
Jewish women and can lead to a
heightened susceptibility to hereditary
breast cancer. "Women want to be
tested, but know their family could
lose insurance if they're found with
the genes," Keats said.
Indeed, recognizing the possible
implications for health insurance, the
researchers concealed the cities the
families lived in and even altered some
subjects' family trees in the journal in
an effort to preserve anonymity.
Such anxiety persuaded Hadassah,
the Women's Zionist Organization of
A
America, to address the National
Institute of Health's forum on genetic
research in April and again in
November.
"We are working to ensure that
potential research groups are not scared
off or harmed by the real and perceived
risks of participation," said Marlene
Post, the national president of
Hadassah.
The study, like others that have
focused on Ashkenazi Jews, concen-
trated on the community because it
has married within its cultural borders
for centuries, which makes genetic
research more valid and traceable.
This fact raises an important ques-
tion for the sectors of the Orthodox
Jewish community that engage in
matchmaking. Family members worry
that if it is known that their relatives
possess a genetic mutation, it might be
difficult to arrange a marriage for them.
Dor Yeshorim, a group in
Brooklyn that offers genetic testing
for prospective couples, has already
received requests for genetic testing
from families in which deafness has
occurred. But the organization's direc-
tor does not know if Dor Yeshorim
would offer testing for the deafness
gene when it becomes available.
Others worry that expecting par-
ents will have their fetuses tested,
which could cause some prospective
parents to opt for abortions. But
some hearing-impaired Jews say that
would not worry them. "You'd be
more likely to find that issue among
hearing parents," said 80-year-old
Bess Hyman, whose own hearing
deteriorated from birth. "I think most
parents would want a child — deaf or
not." Hyman belongs to Temple
Beth Solomon in southern California,
a congregation founded in the 1960s
by hearing-impaired Jews.
"The deaf community doesn't con-
sider deafness a disability," said Jan
Seeley, an administrator at the temple.
Students at Gallaudet University, a
college for the deaf in Washington,
D.C., are excited about the possibilities
of finding out what caused them to
become hearing impaired, said Dr.
Kathleen Arnos, a medical geneticist
and associate professor of biology there.
But Gallaudet students have mixes
feelings about the prospects of a
potential prenatal diagnosis of deaf-
ness, Arnos said. "It is certainly a lit-
tle frightening for the students,
Arnos said. Some think the matter
should be left alone. Others wonder if
the number of deaf babies born will
eventually decrease.
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