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Subject: ETHI: BRCA testing conference
From: Hans Goerl <GENETHICS@delphi.com>
Date: Wed, 12 Nov 1997 01:01:57 -0500

FROM:  pcohen@genetic.dhs.cahwnet.gov

Breast Cancer Conference Re-Cap*
By Pamela Cohen, MS, CGC

On August 23, 1997, the Pacific Southwest Regional Genetics Network
(PSRGN) held its annual conference in San Diego on the very timely topic
of Genetic Testing for Hereditary Breast Cancer with the provocative and,
perhaps to some, disconcerting subheading Should We Stop It?

 The conference attracted over 100 genetic counselors, geneticists, oncology
   nurses, OB/GYN practitioners, and breast cancer consumer representatives

who offered unique perspectives on one of the most publicized uses of
genetic testing. The conference began with a viewing of the video
"Genetic Testing for Cancer Risk: It's Your Choice",  produced by the
National Action Plan on Breast Cancer. This video presents two families
who outline the pros and cons of testing within the context of their
personal circumstances and beliefs.

The opening talk by George Cunningham, MD, MPH, Chief of the California
Genetic Disease Branch, presented a proposal to develop minimum standards
for offering BRCA1/2  testing and to limit testing to only those health
facilities which have
been state-approved. The next several speakers proceeded to review the
various topics that must be considered when forming such policy including
epidemiological questions (Debra Gilliss, MD, MPH-Environmental Health
Investigations Branch), pre-test genetic counseling (Patricia Kelly,
PhD-John Muir Medical Center), post-test options (Jeffrey Weitzel,
MD-City of Hope Medical Center), and laboratory issues (Tom Frank,
MD-Myriad Genetic Laboratories). During the afternoon panel, Barbara
Brenner, Executive Director of San Francisco*s Breast Cancer Action,
argued that BRCA1/2 testing is premature given the current lack of
knowledge and understanding about the implications of both gene positive
and negative results and that more resources should be devoted to
preventing breast cancer rather than predicting its potential occurrence.
In closing the panel, Dr. David Preskill, an OB/GYN practitioner at
Kaiser San Diego, who was invited specifically because he had not
previously been involved in the debate, echoed Ms. Brenner's view that
testing is premature.

 The open microphone discussion brought a wide spectrum of reactions from
the conference participants. While some agreed with Ms. Brenner's position,
others felt that some women would view eliminating BRCA1/2 testing as
paternalistic, infringing on their rights to have access to current
technologies and information. The majority of
participant comments reflected concern about taking extreme measures-that
is, concern about stopping BRCA1/2 testing as well as concern over
allowing testing to proceed unregulated.

 The implicit consensus was that the implications of test results and the
associated issues of genetic discrimination must be addressed and that
testing should continue only through centers meeting certain legislated
standards. Such standards should be developed by a multi-disciplinary
working group including genetic counselors, geneticists, oncologists, breast
 cancer advocates, and public health professionals.

* For more information or to order a video of this confernece, please
contact Pam Cohen at 510-540-2852 or pcohen@genetic.dhs.cahwnet.gov

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