HUM-MOLGEN archive: ETHI: politics of genetic discrimination

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/