AFFIRMATIVE — EMPLOYMENT — GENETIC SCREENING — SIGNIFICANCE 292

GENETIC SCREENING FOR EMPLOYMENT CAUSES PEOPLE TO AVOID GETTING NEEDED TESTS

MUST PROTECT GENETIC PRIVACY SO THAT PEOPLE WILL NOT AVOID TESTING

Wendy Wagenheim, legislative director of the American Civil Liberties Union of Michigan, The Detroit News January 27, 2000, SECTION: Opinion; Pg. Pg. A13 TITLE: Michiganians need strong genetic privacy // acs-EE2001

It's crucial that Michiganians address the privacy of genetic information and the accompanying discrimination through legislation. The scientific advances will be lost if people avoid genetic testing in fear that the information will be used against them.

ABUSE OF GENETIC TESTS MAY STOP PEOPLE FROM GETTING NEEDED TESTS

ARMOND BUDISH, The Plain Dealer March 26, 2000, SECTION: LIVING; Pg. 7L TITLE: HAVING THE WRONG GENES CAN COST YOU YOUR JOB // acs-VT2001

And in another arena, insurance companies may deny coverage after reviewing genetic test results.

Individuals may undergo private genetic tests by their physicians for health reasons. But as more businesses obtain and use these tests against people, fewer folks will opt to have these tests done, perhaps jeopardizing their health.

MANY PEOPLE WILL NOT GET GENETIC TESTS BECAUSE THEY ARE AFRAID THEY WILL BE DISCRIMINATED AGAINST

ROBERT PEAR; The Plain Dealer, February 9, 2000, SECTION: NATIONAL; Pg. 11A TITLE: CLINTON MOVES TO PROTECT WORKERS' GENETIC INFORMATION // acs-EE2001

Scientists had urged Clinton to adopt the privacy protections because of evidence that many people were reluctant to take advantage of genetic tests, or to participate in genetic research, because they feared that the results might be used against them.

FEAR OF POTENTIAL DISCRIMINATION STOPS PEOPLE FROM GETTING NEEDED GENETIC SCREENING

Jo Lenaghan, Senior research fellow, IPPR, The Guardian (London)

July 19, 1999, SECTION: Guardian Leader Pages; Pg. 17 TITLE: Threat of gene tests // acs-EE2001

Fear of potential discrimination may also deter people from taking genetic tests of benefit to them and their families.

PEOPLE AVOID GENETIC TESTING DUE TO PRIVACY CONCERNS

Charles Sykes, Senior Fellow at the Wisconsin Policy Institute, THE END OF PRIVACY, 1999, EE2001-JGM,p.122-3

For many of us, the dilemma of genetic testing is that doing the right thing can be the wrong thing. Getting tested to find out our medical risks may put us at risk of losing jobs or insurance. The new science, which was sup posed to open doors for new treatments, has actually resulted in doors be ing closed. The promise of safety has turned out to be chancy. There is already evidence that many patients who might otherwise benefit avoid genetic testing for fear that the results might damage their insurability or employability. One study of 332 people who belonged to support groups for families with genetic disorders found that 17 percent of the participants withheld genetic information from their employers. A 1997 phone survey found nearly two-thirds of the respondents saying they would refuse genetic tests if they knew their insurer or employer would have access to the results. And researchers trying to study how to keep women with breast cancer gene mutations healthy found that almost onethird of the high-risk women refused to participate hi the study, specifically because they feared the loss of their privacy and thoiught that it might lead to some sort of discrimination.