Senate Sends Genetic Bias Bill to House
Here is the link
WASHINGTON - The Senate has moved unanimously to ensure that breaking down the human genetic code will bring health benefits without exposing people to job and health care discrimination.
The Genetic Information Nondiscrimination Act that cleared the Senate Tuesday on a 95-0 vote would bar employers from using people's genetic information or family histories in hiring, firing or assigning workers. Insurance companies could not use genetic records to deny medical coverage or set premiums.
"The American people cannot have access to the quality of care and the advancement of medical and scientific discoveries if they are subjected and held hostage to the fears of discrimination," said Sen. Olympia Snowe, R-Maine, who has backed the legislation for the past seven years.
The measure was strongly supported by Senate Majority Leader Bill Frist, R-Tenn., a physician, and Democratic leader Tom Daschle of South Dakota. The White House also supported the bill, saying legislation was needed to "help guarantee that the nation fully realizes the potential of ongoing advances in genetic sciences."
But the bill's future is uncertain in the House and it has met resistance from business groups concerned about an increase in lawsuits, and from insurers who say it could add to regulatory burdens.
Rep. Louise Slaughter, D-N.Y., a longtime sponsor of similar House legislation, urged House leaders to take up and pass the Senate bill.
Last April, the National Human Genome Research Institute announced it essentially completed a blueprint of the human genetic code — hailed as one of the greatest scientific accomplishments in history. But Slaughter said "unless Congress acts, it could also lead to rampant abuse of patients' private genetic information."
The concern is that people would forego genetic testing for diseases such as breast cancer, cystic fibrosis or Huntington's disease for fear that information could be used to deny them employment or health coverage.
Dr. Francis Collins, head of the National Human Genome Research Institute, said that when he joined the project 10 years ago genetic discrimination was already becoming an issue "that could cause this wonderful revolution fueled by the genome project to actually be stillborn because people would be afraid of getting the information that otherwise be of great advantage to them for medical purposes."
June Walker, president of the Jewish women's organization Hadassah, said her group has been pushing the issue since Hadassah medical facilities found a high frequency of Jewish women with genetic mutations predisposing them to breast and ovarian cancer. "But as science races ahead, individuals are hesitant to submit to genetic tests for fear of insurance and employment discrimination," she said.
Dr. Donald Young, president of the Health Insurance Association of America, said the bill was "unwise" because consumers already have adequate legal protections. "Imposing restrictions beyond those already in place could hurt the very people they are intended to help by limiting the ability of insurers to appropriately and fairly set premiums," he said.
The legislation bars a company from collecting genetic data from a worker or family member except in special cases, such as monitoring the biological effects of toxic material in the workplace.
House Education and the Workforce Committee Chairman John Boehner, R-Ohio, said Tuesday he would hold hearings on the issue.
Rep. Bob Ney, R-Ohio, chairman of the House Administration Committee and Slaughter's GOP partner in promoting nondiscrimination legislation, said he hoped hearings "would not mean the death penalty for the bill." He said he also would urge House leaders to adopt the Senate bill.
___
The bill is S. 1053.
Here is the link
WASHINGTON - The Senate has moved unanimously to ensure that breaking down the human genetic code will bring health benefits without exposing people to job and health care discrimination.
The Genetic Information Nondiscrimination Act that cleared the Senate Tuesday on a 95-0 vote would bar employers from using people's genetic information or family histories in hiring, firing or assigning workers. Insurance companies could not use genetic records to deny medical coverage or set premiums.
"The American people cannot have access to the quality of care and the advancement of medical and scientific discoveries if they are subjected and held hostage to the fears of discrimination," said Sen. Olympia Snowe, R-Maine, who has backed the legislation for the past seven years.
The measure was strongly supported by Senate Majority Leader Bill Frist, R-Tenn., a physician, and Democratic leader Tom Daschle of South Dakota. The White House also supported the bill, saying legislation was needed to "help guarantee that the nation fully realizes the potential of ongoing advances in genetic sciences."
But the bill's future is uncertain in the House and it has met resistance from business groups concerned about an increase in lawsuits, and from insurers who say it could add to regulatory burdens.
Rep. Louise Slaughter, D-N.Y., a longtime sponsor of similar House legislation, urged House leaders to take up and pass the Senate bill.
Last April, the National Human Genome Research Institute announced it essentially completed a blueprint of the human genetic code — hailed as one of the greatest scientific accomplishments in history. But Slaughter said "unless Congress acts, it could also lead to rampant abuse of patients' private genetic information."
The concern is that people would forego genetic testing for diseases such as breast cancer, cystic fibrosis or Huntington's disease for fear that information could be used to deny them employment or health coverage.
Dr. Francis Collins, head of the National Human Genome Research Institute, said that when he joined the project 10 years ago genetic discrimination was already becoming an issue "that could cause this wonderful revolution fueled by the genome project to actually be stillborn because people would be afraid of getting the information that otherwise be of great advantage to them for medical purposes."
June Walker, president of the Jewish women's organization Hadassah, said her group has been pushing the issue since Hadassah medical facilities found a high frequency of Jewish women with genetic mutations predisposing them to breast and ovarian cancer. "But as science races ahead, individuals are hesitant to submit to genetic tests for fear of insurance and employment discrimination," she said.
Dr. Donald Young, president of the Health Insurance Association of America, said the bill was "unwise" because consumers already have adequate legal protections. "Imposing restrictions beyond those already in place could hurt the very people they are intended to help by limiting the ability of insurers to appropriately and fairly set premiums," he said.
The legislation bars a company from collecting genetic data from a worker or family member except in special cases, such as monitoring the biological effects of toxic material in the workplace.
House Education and the Workforce Committee Chairman John Boehner, R-Ohio, said Tuesday he would hold hearings on the issue.
Rep. Bob Ney, R-Ohio, chairman of the House Administration Committee and Slaughter's GOP partner in promoting nondiscrimination legislation, said he hoped hearings "would not mean the death penalty for the bill." He said he also would urge House leaders to adopt the Senate bill.
___
The bill is S. 1053.