Ethics group to
tackle genetic testing
for Alzheimer's disease
BY TIM STEPHENS
An explosion of new
findings on the role of genetics in Alzheimer's disease
in recent years has raised ethical questions about the
potential uses of tests to detect a genetic
predisposition for this disease. Experts in medicine,
genetics, ethics, law and other fields will explore the
implications of such testing during a conference at
Stanford on Saturday, Oct. 25.
The meeting titled
"Genetic Testing and Alzheimer Disease: Has the Time
Come?" is the second annual conference of
Stanford's Program in Genomics, Ethics and Society
(PGES). The all-day conference will be held in Kresge
Auditorium, beginning at 8:00 a.m. Stanford
undergraduate, graduate and medical students can receive
one unit of credit for attending the conference (Med
253), which has also been approved for seven credit hours
of continuing medical education in Category 1 (course
67600).
In preparation for the
conference, a PGES working group is developing a set of
recommendations concerning genetic testing for
Alzheimer's. Henry T. Greely, professor of law and PGES
co-director, will present the working group's draft
recommendations for comment during the conference.
"One of our goals is
to serve an educational role in making the public
including scientists, medical professionals, family
members and caregivers more aware of the issues,"
Greely said.
The role of genetic
factors in Alzheimer's disease is complex. Geneticists so
far have identified three genes in which mutations are
strongly associated with the disease, as well as one gene
that increases a person's risk of developing the disease.
Additional genes have been implicated. In most cases,
however, the role of genetic factors is unknown.
Because diagnosis of
Alzheimer's can be difficult, genetic tests may be useful
for this purpose. The results of such tests could also
have predictive implications, however, for family members
of patients, Greely noted. "The whole question of
the reasonable uses of genetic tests for this disease has
turned out to be very complicated," he said.
The multidisciplinary PGES
working group has been examining this topic since the
beginning of the year. The group includes more than 35
active members representing the fields of medicine,
sociology, anthropology, biochemistry, law, education,
health policy, genetics, psychology and biomedical
ethics. Members include faculty and health professionals
from Stanford and other institutions; undergraduate,
graduate and postgraduate students; and community
activists and laypersons.
"One of the special
things about our working group is the range of
backgrounds of the people involved. We have found it very
useful to include not only people with professional
backgrounds, but also those with a family member who has
the disease," said Greely.
The working group will
produce a final, book-length report, including
recommendations, by the end of December. This month's
conference will serve as a forum for discussion, debate
and refinement of the draft recommendations.
"Ultimately, we hope
to influence public policy, so that society, governments,
medical systems, physicians and others take into account
the challenges raised by these new technologies,"
Greely said.
Information on the
conference is available on the World Wide Web at
http://www.stanford.edu/leland/ dept/scbe/adconf.htm.
PGES, part of the Stanford
University Center for Biomedical Ethics, was launched in
1995 with a three-year unrestricted gift from SmithKline
Beecham Corp. Other sources of operational funding
include the Beckman Center for Molecular and Genetic
Medicine and the Walter and Elise Haas Fund. SR
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