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20 Hum. Rts. 14 (1993)
Protecting the Essence of Being - Theresa Morelli Advocates Laws to Limit Access to Genetic Profiles

handle is hein.journals/huri20 and id is 16 raw text is: PROTECTING THE ESSENCE OF BEING is to develop genetic tests and find cures Theresa Morelli for the more than 4,000 genetic diseases affecting humans. advocates laws to While breakthroughs are already be- limit access to ing made-the genes for Huntington's disease, Tay-Sachs, cystic fibrosis, and genetic profiles muscular dystrophy have been pin- pointed-Theresa Morelli sees the dan- Human Rights Interview ger of discrimination against individuals based on what is known about their by Vicki Quade genes. According to scientific estimates, all hu- mans carry from four to 70 genetic de- fects. Some are small ones, others lead to major genetic diseases. In 1988, the U.S. government launched the $3 billion, 15-year Human lenome Project. Its purpose is to locate and identil'y the estimated 100,000 geiies on the 46 human chromosomes. The aim A 1989 graduate of the University of Akron law school, Morelli was denied insurance coverage when the under- writer learned that her father was di- agnosed with Huntington's disease, a progressive neurological disorder. She was 29 at the time, in good health, and furious. The insurance company did not offer to exclude coverage for HD or offer her coverage at a higher premium. She eventually got disability coverage under a group policy through the Amer- ican Trial Lawyers Association. She also later learned that her father's diagnosis was incorrect-his physicians now be- lieve he has a progressive form of Al- zheimer's. Without legislative protection, she be- lieves, families affected by genetic dis- orders and genetic predispositions will be uninsurable and forced onto the wel- fare and Medicaid rolls. She is now a lawyer with a mission-to secure fed- eral legislation protecting the privacy of genetic information from insurers, banks, schools, and other institutions. We must prevent this abuse of biotechnology be- fore it's too late,' she says. Morelli has already worked with two Ohio legislators to prepare legislation banning discriminatory underwriting as part of the state's new health care re- form package. That proposal was ap-

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