[Editor's Note: For additional background on the ethical problems in genetic testing, see "Genetic Dilemmas" in a previous edition of the Albion Monitor.]

State Genetic Discrimination Laws Debated

by Ann Stoltz

	A blood test can now tell a woman if she carries the gene linked to breast cancer -- but few women really want to know. Their major fear is not just that they may have breast cancer -- it's that the results might be used against them. Progress in genetic research in recent years is proving to be a double-edged sword for many private citizens. The same knowledge that holds the promise to prevent and cure also holds a potential threat of unemployment and denied insurance.
Laws to prevent insurance underwriters from using genetic information to deny health coverage	Dr. Paul Billings of Palo Alto has collected dozens of reports about people turned down for insurance or a job solely on the basis of their genes. Jane Karuschkat took five days off work for a mastectomy. One week after her first chemotherapy treatment she was fired because her employer said he could not afford to keep her. David Manikian's parents discovered through a genetic test that their one-year-old son had the gene for Fragile X Syndrome, which meant he might be a slow learner. The family's health insurance was canceled. A pregnant woman who had a child with cystic fibrosis asked to have her fetus tested for the disease. The results were positive and her insurer would not cover the cost of the diagnostic test nor any other medical expenses connected with the unborn child, unless the fetus was aborted. Based on cases such as these, several laws have been put into place to prevent insurance underwriters from using genetic information to deny health coverage. A 1995 law, SB 1020 by State Senator Pat Johnston, attempts to eliminate the use of genetic testing when it came to evaluating people for health insurance. His new bill, SB 1740 which becomes law January 1, goes further, prohibiting the use of family history in underwriting. "Most states are operating under laws that were written prior to the 'Human Genome Project,' which is a 15-year, $3 billion, federally funded project," said Lisa Matocq, consultant to Johnston. "The goal of the project, she said, is to identify and pinpoint the history of every gene in the human body -- over 100,000 genes.
Employers can access genetic info on workers	Under current law employers can still access genetic information if they pay the health care premiums of the employee, Matocq added. Johnston is working on further legislation to prevent employers from using the data to make employment decisions. Johnston says in the genetic testing community, a standing joke says that one day, only one person in the United States will have health insurance -- and only because he has never been tested. Everyone would have to be removed from the insurance pool because everyone is predisposed to some type of disease, said Mary Clair King, formerly a professor of genetics and epidemiology at the University of California, Berkeley. King, now with the University of Washington's Genetics and Epidemiology Department, notes that some breast cancers occur successively in families, generation after generation. She said now that scientists are hurrying down the track to pinpoint those inherited traits that trigger illnesses, the individual's right to privacy in medicine needs to be addressed. However, she said, genetic research is worth pursuing because then we can predict who will develop what type of disease and how to defeat it. A survey to determine insurance company opposition or support for SB 1740 was conducted by Senator Johnston, Matocq said, asking if family history was being used in determining rates. Most insurance carriers said they were not, she said.

A blood test can now tell a woman if she carries the gene linked to breast cancer -- but few women really want to know. Their major fear is not just that they may have breast cancer -- it's that the results might be used against them.

Progress in genetic research in recent years is proving to be a double-edged sword for many private citizens. The same knowledge that holds the promise to prevent and cure also holds a potential threat of unemployment and denied insurance.

Laws to prevent insurance underwriters from using genetic information to deny health coverage

Dr. Paul Billings of Palo Alto has collected dozens of reports about people turned down for insurance or a job solely on the basis of their genes.

Jane Karuschkat took five days off work for a mastectomy. One week after her first chemotherapy treatment she was fired because her employer said he could not afford to keep her.

David Manikian's parents discovered through a genetic test that their one-year-old son had the gene for Fragile X Syndrome, which meant he might be a slow learner. The family's health insurance was canceled.

A pregnant woman who had a child with cystic fibrosis asked to have her fetus tested for the disease. The results were positive and her insurer would not cover the cost of the diagnostic test nor any other medical expenses connected with the unborn child, unless the fetus was aborted.

Based on cases such as these, several laws have been put into place to prevent insurance underwriters from using genetic information to deny health coverage.

A 1995 law, SB 1020 by State Senator Pat Johnston, attempts to eliminate the use of genetic testing when it came to evaluating people for health insurance. His new bill, SB 1740 which becomes law January 1, goes further, prohibiting the use of family history in underwriting.

"Most states are operating under laws that were written prior to the 'Human Genome Project,' which is a 15-year, $3 billion, federally funded project," said Lisa Matocq, consultant to Johnston. "The goal of the project, she said, is to identify and pinpoint the history of every gene in the human body -- over 100,000 genes.

Employers can access genetic info on workers

Under current law employers can still access genetic information if they pay the health care premiums of the employee, Matocq added. Johnston is working on further legislation to prevent employers from using the data to make employment decisions.

Johnston says in the genetic testing community, a standing joke says that one day, only one person in the United States will have health insurance -- and only because he has never been tested.

Everyone would have to be removed from the insurance pool because everyone is predisposed to some type of disease, said Mary Clair King, formerly a professor of genetics and epidemiology at the University of California, Berkeley.

King, now with the University of Washington's Genetics and Epidemiology Department, notes that some breast cancers occur successively in families, generation after generation. She said now that scientists are hurrying down the track to pinpoint those inherited traits that trigger illnesses, the individual's right to privacy in medicine needs to be addressed.

However, she said, genetic research is worth pursuing because then we can predict who will develop what type of disease and how to defeat it.

A survey to determine insurance company opposition or support for SB 1740 was conducted by Senator Johnston, Matocq said, asking if family history was being used in determining rates.

Most insurance carriers said they were not, she said.

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Albion Monitor October 17, 1996 (http://www.monitor.net/monitor)

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State Genetic Discrimination Laws Debated

by Ann Stoltz

Laws to prevent insurance underwriters from using genetic information to deny health coverage

Employers can access genetic info on workers

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