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To: Multiple recipients of list HUM-MOLGEN <HUM-MOLGEN@NIC.SURFNET.NL>
Subject: ETHI: Multiplex screening
From: Hans Goerl <GENETHICS@delphi.com>
Date: Sat, 18 Nov 1995 17:36:07 -0500

Two responses to the question about markets for multiplex genetic screning
tests:


From: "E. ALLEN SMITH" <EALLENSMITH@MBCL.RUTGERS.EDU>


     In regard to Mr. Goerl's interesting questions on the
multiplex gene detection system, I would like to propose two
possible legitimate uses of such tests, beyond the other ones he
mentioned. These services are sperm banks and diagnostic work.
     It is useful for sperm banks to screen their prospective
donors for alleles that may cause disease in their descendents.
This usage would be useful regarding both carrier status and
alleles of which the phenotypic expression does not clearly appear
at the donor's age (i.e., Alzheimer's). Given the probable
commonness of carrier status, it may be most useful also to screen
prospective clients to inform them whose sperm it would be
inadvisable for them to use. This argument is strengthened by that
it is better to know about possible carrier status due to a
detectable allele than due to a currently undetectable one. The
screening out of donors with alleles with incomplete or complete
dominance and delayed negative effects is an obvious benefit.
     Admittedly, one conflict that may emerge in this regard is
informing donors of detected carrier or probable later illness
status. Such information should definitely be kept confidential,
and should be handled by the ethical standards of genetic
counseling. Since such counseling is not my field, I will defer on
comments about it at this time.
     Some purposes of such tests may also be fulfilled by
investigations of family history. However, such inquiries can be
inaccurate and incomplete, especially regarding carrier status and
diseases whose genetic basis was not understood until recently. A
combination of such inquiry and genetic testing methods will
probably be the best route for some time. This optimality is
primarily because the alleles responsible for many genetic
(especially partially genetic) diseases have not yet been
identified.
     Some may raise the hoary specter of eugenics and recoil in
horror at the idea of a prospective mother wishing to decrease the
likelihood of her offspring having a disease. Unlike earlier
eugenic efforts such as in Nazi Germany and (early in this century)
the U.S., such means as I have mentioned are prima facie neither
coercive nor inherently racist. I therefore do not see validity in
such objections, which would otherwise be quite tenable. Of course,
if a government chose to impose limits on sperm banks to require
such screening, such would be, I believe, clearly unjustified. This
governmental coercion would prevent a prospective mother who did
not want to use such screening (for whatever reason) from using
sperm banks. However, a requirement that sperm banks not claim to
be using such technology when they were would be justified, since
such a claim would be fraud.
     The other case in which, if properly designed, such tests
could be useful, is in diagnostic work. By proper design, all of
the negative allelic variations detected should, at least in their
early stages, be difficult to distinguish on the phenotypic level.
Not being a physician, I am uncertain what disease states would be
appropriate candidates for this usage. Since the press release in
question does not state what diseases (or potential diseases) are
detected, it is difficult to tell if the initial kit would be
useful for such an application. However, the (quite ingenious)
techniques involved appear relatively easy to extend.
     Sincerely Yours,
     -E. Allen Smith

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

X-Sender: pmorris@ache.mad.adelaide.edu.au


          Your cynicism may be well founded, but to answer one of your
questions, Yes, large numbers of people wish to have their children screened
for genetic diseases.  Every year 30 million neonates are screened for a
number of different genetic diseases shortly after birth.  This is
potentially a large market for such technology.

Regards, Phillip Morris.

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