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Ethics

A Press Release critical of multi-disease screening technology

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1 Release

November 7, 1995

Today's announcement by Genzyme Corporation that it has developed a technology capable of simultaneously analyzing individual's DNA samples for hundreds of different genetic mutations poses a grave threat to the civil rights and privileges of every American citizen.

By using this technology, insurance companies, employers, government agencies, educational institutions and others will be able to order up complete genetic screening panels. The resulting information will then be used to deny insurance, jobs, promotions and other rights and privileges, solely because the person is likely to get sick some time in the future. People who happen to have the wrong bits of DNA will be condemned to become members of new genetic underclass, unable to obtain basic rights and privileges that are necessary to have any chance at success in life.

Moreover, as mutations predisposing people to behavioral tendencies such as alcoholism, aggressiveness or schizophrenia are more clearly identified, this technology will undoubtedly be used to predict who is likely to "misbehave" in the future, and these individuals, regardless of the fact that they may have led exemplary lives will have their careers, their insurability and their social status destroyed. Just imagine sitting in your next job interview and trying to convince an interviewer that you really are not an alcoholic, despite what the genetic test says.

The medical benefits of this new technology are dubious at best. The vast majority of the diseases for which genes have been identified are not curable or preventable. Genetic therapies, which are the ultimate goal of The Human Genome Project have been extremely disappointing in clinical trials; indeed the NIH is currently re-evaluating its entire gene therapy program.

Therefore, millions of people, most of whom will not have even wanted to learn their genetic destiny, but were forced to do so in order to get a job or get insurance, will be left with this toxic knowledge and precious little hope.

While Genzyme is apparently assuring people that their technology will not be used without the development of genetic counseling protocols, such assurances can easily be broken when, say, an insurance company or government agency places an order for tens of thousands of tests.

The Genethics Center calls upon all state and federal legislators, all state insurance commissioners, and all state and federal labor departments to immediately enact legislation to prohibit ANY acquisition of, or use of genetic information by any person other than a physician.

The Genethics Center further calls upon the FDA, which has to date equivocated on whether to exercise its regulatory authority over genetic testing, to immediately notify Genzyme and other companies which have announced or are already performing genetic predispositional testing that it intends to require full pre-market approval before these tests are released upon an unsuspecting American populace.

END

The Genethics Center, located in Hagerstown, Md. is a non-profit organization dedicated to education about, and opposition to, genetic discrimination. For further information, contact Hans Goerl at 301-733-0800 or 739-4138. E-mail address genethics@delphi.com

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