by Kim Coghill

Washington Editor

WASHINGTON - The publication by two groups last week of the sequencing of the human genome caused at least one congresswoman to take quick action by reintroducing a bill that aims to protect the public from the discrimination that the breakthrough could create.

It was a day for the history books Feb. 12 when J. Craig Venter, president of Celera Genomics, and Francis Collins, director of the government's Human Genome Project, sat beside each other and said their similar interpretations of the genome were being published in Science and Nature, respectively. But behind the scenes, U.S. Rep. Louise McIntosh Slaughter (D-N.Y.) was rallying support for her bill, the Genetic Nondiscrimination in Health Insurance and Employment Act.

"Over five years ago, I introduced the first legislation in Congress to ban genetic discrimination in health insurance," Slaughter said in a statement before the House last week. "Since that time, science has rocketed ahead at a speed no one predicted, even within the genetics community. Social policy, however, has not kept pace. A comprehensive law is needed to protect Americans against the misuse of their genetic information."

Already, Slaughter pointed out, the rights of employees are being violated via science. Just days before Venter and Collins held their press conference, news hit the streets that the Equal Employment Opportunity Commission had filed suit against Burlington Northern Santa Fe Railroad (BNSF) alleging that the company required genetic tests for employees who filed claims for certain work-related hand injuries.

The lawsuit, filed in U.S. District Court in Sioux City, Iowa, accused BNSF of broadly requiring the DNA tests from employees who had filed carpal tunnel injury claims. The company released a statement saying the test was requested for employees who filed hand-related claims, but the results were not used to determine an employee's ability to perform a job. Regardless, BNSF, of Fort Worth, Texas, voluntarily suspended testing.

When asked about the lawsuit and its impact on the release of the sequenced human genome, Venter said a genetic discrimination law appears necessary until "science can catch up with our ignorance."

And although the BNSF saga seemingly had a happy ending for all parties, Slaughter and others in Congress are pushing forward to avoid similar situations.

Slaughter's legislation would prevent employers from requiring or requesting that employees disclose genetic information or take a genetic test.

The legislation, initially proposed last year, also would prohibit insurers from requesting or requiring that an individual disclose genetic information. "Too many Americans are deciding not to take a genetic test because they are afraid the information could be used by their insurer to deny them coverage or raise their rates to unaffordable levels," Slaughter told the House. "Vital medical decisions like these should be made based on solid science and personal reflection, not the fear of insurance discrimination."

Slaughter's bill has the support of Senate Democratic Leader Tom Daschle (D-S.D.), Sens. Tom Harkin (D-Iowa), Christopher Dodd (D-Conn.), Edward Kennedy (D-Mass.) and Rep. Constance Morella (R-Md.). The bill was introduced in the House with 152 bipartisan cosponsors.

Sen. Bill Frist (R-Tenn.) and Olympia Snowe (R-Maine) are expected to introduce a genetic discrimination bill this week.

Last February, former President Bill Clinton signed an executive order banning genetic discrimination for federal employees. And last July, the Senate passed an amendment on genetic discrimination, but the amendment was later dropped from the legislation.

Frist, Breaux Reintroduce Prescription Drug Bill

While President George Bush's proposed $48 billion temporary prescription drug plan begins to lose steam on Capitol Hill, other lawmakers are seeking the opening to draw support for their own plans.

The Breaux-Frist bills, reintroduced this session by Sens. Frist and John Breaux (D-La.), are gaining momentum as a starting point for congressional negotiations.

Carl Feldbaum, president of Washington-based Biotechnology Industry Organization, said in a prepared statement, "BIO has consistently advocated ensuring that seniors have affordable private-sector drug coverage and stop-loss benefits to limit their out-of-pocket expenses when they are sickest and their medical costs are the highest. These are two of six key principles BIO adopted at the beginning of the Medicare reform debate to guide the biotech industry's evaluation of proposed legislation."

The first bill submitted by the senators, Breaux-Frist I, addresses the need for prescription drug coverage while providing the necessary reforms to strengthen the Medicare program. It provides comprehensive structural reform to tackle financial challenges facing Medicare and ensures that the program will remain solvent. The second proposal, Breaux-Frist II, which also offers universal prescription drug coverage, includes incremental program reforms.

The $163 billion bill takes Medicare from the control of the Health Care Financing Agency (HFCA) and establishes an independent, executive-branch Medicare agency to oversee all competing health care plans that could include a new prescription drug benefit.

The plan provides outpatient prescription drug coverage with a $250 deductible and initial coverage up to $2,100 with a 50 percent coinsurance. It protects seniors from catastrophic costs by providing a stop-loss protection of at least $6,000 so beneficiaries never have to pay more than $6,000 out of their own pockets.

Sen. Chuck Grassley (R-Iowa), chairman of the Committee on Finance, in a prepared statement said, "The Breaux-Frist bill introduced last year will be the starting point for Medicare legislation in the Finance Committee. It incorporates the principles that are critical to saving Medicare. These principles include adding a prescription benefit only in the context of overall Medicare modernization, improving the Medicare+Choice program, and clearing bureaucratic hurdles at HFCA." n