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To: HUM-MOLGEN@NIC.SURFNET.NL
Subject: ETHI: Responses to Sheffield and BRCA me
From: Hans Goerl <GENETHICS@delphi.com>
Date: Thu, 20 Nov 1997 09:35:34 -0500

This ETHI posting contains 5 submessages. The first concerns BRCA testing
and the next 4 are responses to the post concerning premature marketing of
predictive genetic tests and questionable confidentiality agreements.

Hans Goerl
ETHI editor
************************************************************************

1) From:   IN%"PandaGroup@aol.com"

Frankly, I see absolutely no use for BRCA1/2 testing.  I had this discussion
with a vice president of one of the major testing operations
producing/conducting these tests at a CHI conference in San Francisco last
February.

BRCA1/2 testing cannot be used as a screening tool.  It is far too
expensive.  Nobody in their right mind would reimburse a test that picks up
such a small percentage of the potential breast cancer population.


Assuming you found the gene in a woman, what would you do?  Well, you could
do a radical prophylactic mastectomy .. what a joy for the woman .. and I
know of no surgeon who would guarantee that NO breast cells might be left
behind, resulting in a later malignancy anyway. Moreover there have already
been reports of unnecessary mastectomies following false positive BRCA
tests.
So this really means that increased
survellance of the patient is the most likely step to be  employed.

Let's go back to the test.  SInce it's too expensive to use for screening,
how does one decide who will be tested?  Simple, by family history.  So, if
a
woman has a family history of breast cancer, the BRCA1/2 test is
administered ... the primary action taken post-test being increased patient
surveillance.

Aha, but what criteria are now used to employ increased patient surveillance
.. why, family history.

So, family history is used to administer an expensive test to tell us to do
what the family history would have told us to do anyway.

Brilliant .... !

Ken Krul, Ph.D.


*****************************************************************************
 ****



2) From: Don Ball <biotech@VT.EDU>

Recently the URL for the ELSI Task Force on Genetic Testing report was
posted to  HUM-MOLGEN.  This URL led to the report without appendices.  The
following URL
not only has the full report but also the appendices.

Don

The full final report, including appendices, is available at:

        http://www.nhgri.nih.gov/ELSI/TFGT_final/

        If you have trouble let us know and we can mail hard copy.

Neil Holtzman
*****************************************************************************
 *****


3) From: rroush@waite.adelaide.edu.au (Rick Roush)


Thanks for the following message, which I found incredible.  I agree with
all of Goerl's opinions, except that I don't think that the agreements
similar to that between Sheffield and the company are yet commonplace.
This is by far the most extreme I have ever even heard of.  I can say
without fear of contradiction that such an agreement would not be accepted
at my former employer, Cornell University, and I suspect that it would not
be accepted at any other US public university or my current university.

Rick Roush


Richard T. Roush
*****************************************************************************
 *****


4) From:   IN%"dcurtis@hgmp.mrc.ac.uk"

The prospectus seems to acknowledge that a lot more work will need to be
done, and that there are therefore major risks for investors at this
stage. I don't see that there is necessarily a risk taht the tests will
be released prematurely.

The main ethical concern is that the commercial interests of the company
may delay publication and clinical utilisation of results. It is not
clear how serious this problem is. If the company can file patents to
protect its new discoveries then hopefully publication can proceed
without too much delay.

--
Dave Curtis                     Tel   : +44-171-377-7729
Dept Adult Psychiatry           Fax   : +44-171-377-7316
3rd Floor Outpatient Building   Email : dcurtis@hgmp.mrc.ac.uk
Royal London Hospital           WWW   :

EDITOR'S NOTE: It seems to me that the main ethical concern is
that negative results may never see the light of day. HG

*****************************************************************************
 *************


5) From: Thomas Lavin <tlavin@GENSIS.COM>

thank you very much. but ...(a large public university in California)...
has likely been doing this for years.  ONly few US universities try to
separate acedemics from money, and I take my hats off to those that do.

****************************************************************************

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