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To: HUM-MOLGEN@NIC.SURFNET.NL
Subject: ETHI: politics of genetic discrimination
From: Hans Goerl <GENETHICS@delphi.com>
Date: Wed, 21 May 1997 20:52:36 -0400

Last Sunday President Clinton spoke out for the first time about the
potential misuse of genetic information. He called for Congress to prohibit
use of predictive genetic information by health insurers.  Here are two
press releases issued in response to the President's remarks. Please note
that I am the Executive Director of The Genethics Center, which issued the
first release.

I have been unable to locate any response from the insurance industry, but
if any of our subscribers knows of one, we will certainly distribute it as
well.

Comments about the President's remarks or the issues raised in the press
releases are solicited.

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

1)
May 18, 1997
FROM: THE GENETHICS CENTER

FOR IMMEDIATE RELEASE

          In a commencement address at Morgan State University in Maryland
today,  President Clinton for the first time addressed the issue of genetic
discrimination.  He called for Congress to enact bi-partisan legislation
prohibiting the use of genetic information by health insurers.

While the President is to be commended for  acknowledging that genetic
information can be used for inequitable and unjust purposes, it must be
pointed out that his proposal is very limited.  It says nothing about the
use of individuals' genetic information by life insurers, disability
insurers, employers, banks, governments and other institutions.  While those
individuals who are considering undergoing genetic testing may take some
comfort in knowing that the results may not be used to deny them health
insurance, they will still have to deal with the fact that a negative
genetic prediction can still be used to deny them many other civil rights
and liberties.

The use of genetic information by life insurers alone will be enough to
disqualify millions of people from ever obtaining business loans which
require key person insurance.

Unless comprehensive national legislation guaranteeing genetic privacy and
protecting individuals from ANY use of their genetic information against
them is passed,  many millions of people will remain at risk of having their
lives ruined merely because their genes say they are likely to get sick or
to exhibit undesirable behaviors at some time in the future.

The political reality behind the President's announcement is that neither
the President nor the Congress has the fortitude to stand up to the many
institutions which have a vested interest in learning who has what genes and
treating people differently on that basis.  Even Senator Pete Domenici, who
introduced fairly strong genetic discrimination legislation last year has
yielded to these pressures and introduced a much weaker bill this year.

 No person's rights, privileges or opportunities should be limited simply on
the basis of a genetic prediction  and until our political leaders act
accordingly, the rapid advances in genetics over the last decade will end up
hurting millions more people than they help.

Genetic science has the potential to be the driving force behind wonderful
and great advances in health care. It also has the potential to be used as
the ultimate weapon of the oppressive forces in our society which seek to
limit individual's access to all of the advantages of a free society.
President Clinton has taken the first step toward limiting that terrible
latter potential and it is up to others who are aware of the dangers to take
that momentum and use it to insure that neither this, nor any other country,
 becomes a genetocracy.

END of RELEASE
The Genethics Center is a non-profit organization dedicated to education
about, and opposition to, genetic discrimination.

*****************************************************************************
**** 2)

Headline: BIO Responds to Clinton Comments on Science

Date: Sun, May 18, 1997
                 BIO Responds to Clinton Comments on Science

 Biotechnology Industry Organization (BIO) President Carl B. Feldbaum issued
the following statement in response to President Clinton's comments on
science and genetic discrimination in his commencement speech today at
Morgan State University:

    "In terms of genetic testing and the potential for discrimination or
violation of privacy, we would go beyond the President's comments in two
ways: First, virtually all medical information should be safeguarded, not
just genetic data.  Even a cholesterol test can be used to discriminate.
Senator Pete Domenici currently has a genetic privacy bill, and its scope of
protection needs to be broadened.     "Second, while the President focused
on potential discrimination by the insurance industry, we should also be
thinking about potential discrimination against individuals in education and
employment as well.     "The President is also right to point out that
science is not God and that it has no soul of its own.  But he goes too far
if he means to infer that scientists have no soul, or aren't deeply
concerned or actively involved in addressing the ethical and moral issues
associated with their work."

    BIO represents over 700 biotechnology companies, academic institutions
and organizations in 47 states and in 20 countries involved in the research
and development of health care, agricultural and environmental biotechnology
products.

SOURCE  Biotechnology Industry Organization
    -0-                            5/18/97
    /CONTACT: Dan Eramian, 202-857-0244, or 703-768-4882, or Carl B.
Feldbaum, 301-469-0632, both of Biotechnology Industry Organization/


   
 
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