November 25, 2024
Editorial

Opening the Genetics Book

Advances in the science of genetics, including completion of the mapping of the human genome last year, have brought breakthroughs in the diagnosis and treatment of diseases and hereditary conditions. But this scientific progress has not been without peril. Knowing someone is predisposed to cancer, for example, an employer may be less likely to hire that person or an insurance company may deny coverage or increase rates based on that information. Fears of such action may keep people from seeking genetic screening that could save their lives.

“Like a book that is never opened, the wonders of the genome are useless unless people are willing to take advantage of it,” said Sen. Olympia Snowe, who has long championed federal legislation barring discrimination based on genetic information.

Too often, however, the book is not opened. Sen. Snowe tells the story of Bonnie Lee Tucker of Hampden, a breast cancer survivor. Nine women in her family have been diagnosed with the disease, but Ms. Tucker’s daughter has held off having a diagnostic test for breast cancer for fear that it will ruin her chances of obtaining health insurance in the future. Such stories would become a thing of the past if a bill sponsored by Sen. Snowe becomes law, as it should.

Earlier this week, after six years of negotiation, Sen. Snowe’s bill, which would prohibit discrimination in employment and insurance matters based on genetic information, was endorsed by the Senate Committee on Health, Education, Labor and Pensions. It took a lot of compromises to get this far. A key to earning bipartisan support for the measure was ensuring that healthy people with a genetic predisposition to a disease were not afforded more protection than someone who already has the illness.

Sen. Snowe’s bill accomplishes this by building upon existing privacy protection and nondiscrimination laws. Rather than creating a new class of protected people and remedies, this bill builds on existing protections under the federal Civil Rights Act.

Under Sen. Snowe’s proposal insurance companies would be barred from collecting genetic information prior to one’s enrollment in a health plan and would not be able to use genetic information to deny coverage or set premium rates. Genetic information could not be used by employers to make hiring, firing, promotion and job assignment decisions.

These protections are needed to ensure that people, like Bonnie Lee Tucker’s daughter, get the genetic testing they need in order to safeguard their health. As such, they should be supported by the full Congress when the bill comes up for debate later this year.


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