Human Exceptionalism

Outlawing Genetic Discrimination

Well, this is long overdue. Congress overwhelmingly passed, and the president will sign, a bill outlawing genetic discrimination in employment and insurance. From the story:

The bill passed with overwhelming support in the House on a 414-1 vote, a week after being approved by a 95-0 vote in the Senate. The only member of Congress to vote against the bill was Rep. Ron Paul, R-Texas. President Bush has promised to sign it.

But the nearly unanimous support for the measure masks a hard-fought 13-year battle to pass the bill. Health insurers and employers groups fought the measure vigorously, and ultimately secured some changes to the bill. House GOP leaders, who viewed some provisions as anti-business, blocked it from reaching the floor until Democrats took power last year.

The bill has strong support from medical researchers and Bay Area biotech companies, who say the fear of genetic discrimination has discouraged people from participating in clinical trials, slowing the development of treatments. Even as new types of genetic tests have hit the market, many people have been reluctant to get tested.

The National Institutes of Health reported that 32 percent of women offered a genetic test to determine their risk of breast cancer declined because they worried they would lose their health insurance. An NIH study of families with a history of colon cancer found that 68 percent said they would not bill the test to their insurer for fear of losing coverage and 26 percent would test using an alias.

I think a few comments are in order here. First, look how hard it was to pass a law that should not have been so contentious. This shows, I think, how extraneous agendas often impede important public policies.

Second, we have entered an era in biotech that is akin to the old anarchic wildcat oil drilling days. It is pure laissez faire, baby. Companies are going to do what they are going to do and the government either has no desire to thwart unethical research because our legislators have no backbone to get past the lobbyists. This means that badly needed ethical parameters around what may be the most powerful force in human history, may never be erected.

Finally, while this is an important piece of legislation, realize that there really is no such thing as privacy anymore. If someone gets some of your DNA, anyone can know the most intimate factors about your biological makeup since there are now DNA chips that will test your genes. Heck, they could then post it on the Internet. And since self restraint has become passe, we all need to steel ourselves for the wall-less future.

So a half-hearted bravo to Congress. It finally did the right thing. But it took too long, it is really very little, and it is almost too late.