Senate Votes Federal Standard For Gene Information Use

The Senate unanimously passed a bill last month to prohibit discrimination against individuals on the basis of their genetic information for employment and insurance purposes.

The legislation (S 1053) would establish federal standards to protect the privacy of genetic information. The Coalition for Genetic Fairness, which includes APA and the AMA, supports the legislation.

“Today the United States Senate took a historic step toward allowing Americans to realize the full promise of emerging medical technologies when it passed the Genetic Information Nondiscrimination Act of 2003,” said Debra Ness, executive vice president of the National Partnership for Women and Families, in a press release. The partnership staffs the coalition.

“Nobody should have to choose between the benefits of genetic testing and keeping a job or health insurance,” said Ness.

The bill would fill a gap in the 1996 Health Insurance Portability and Accountability Act (HIPAA), which didn’t address genetic information explicitly.

“The legislation is timely and would prevent further erosion of protections for patient genetic information,” said Eugene Cassell, acting director of APA’s Division of Government Relations, in an interview with Psychiatric News.

APA and its members urged the Senate to strengthen the privacy-protection language in the bill so that patients’ genetic information could not be accessed without their consent. However, the bill passed 95-0 without any amendments.

The coalition sent a letter last month to House Speaker Dennis Hastert (R-Ill.) urging immediate action on the bill.

Business organizations oppose the bill, saying that it is premature given that the publication of the final draft of the Human Genome Project and the effective date of the HIPAA privacy rule occurred only recently.

The House Education and Workforce Committee and the Subcommittee on Employer-Employee Relations announced the day the bill passed the Senate that they would hold hearings on the issue of genetic nondiscrimination but did not specify when.

“This is an issue with serious implications for employers and workers, and we will examine it in a balanced manner that focuses on protecting the rights of employees and ensuring that any new mandates placed on employers don’t jeopardize worker benefits,” said Rep. Sam Johnson (R-Tex.), chair of the Subcommittee on Employer-Employee Relations.

The bill can be accessed on the Web at http://thomas.loc.gov by searching on the bill number, S 1053. ▪