It's time, at long last, to take action. A comparable Senate bill, the Genetic Information Nondiscrimination Act, passed 95 to 0 last October. And President Bush has indicated that if passes in the House, he'll sign the bill into law. Yet even with 237 congressional reps as co-sponsors, the powerful Energy & Commerce Committee still hasn't slated the bill for a vote.
Genetic privacy may not be a headline grabber, but the House should make this bill a priority -- despite the opposition of powerful insurance companies. By outlawing genetic discrimination, Congress would be taking a good first step in tackling what privacy advocates warn is one of the biggest medical-privacy challenges of the 21st century.
One of those advocates is professor George Annas. The chairman of Boston University's Health Law, Bioethics & Human Rights Dept., Annas is a pioneer in the field of patients' rights. Over the past 30 years, he has written or edited 12 books on health law, including the groundbreaking The Rights of Patients, published in 1975 and now in its third edition.
And in 1995, he drafted a report calling for a Genetic Privacy Act to regulate the collection, storage, and use of DNA. On Mar. 30, I asked Annas about his thoughts on the need for federal laws not only to prevent genetic discrimination but to safeguard the privacy of sensitive medical information. Here are excerpts from our conversation:
Q: You've called genetic information "a future diary," a penetrating look into a person's secret future. Why? How is genetic information different than other medical information?
A: There are two major differences between genetic and traditional medical information. The first is that genetic information is not diagnostic, it's probabilistic. It's about your future. It can tell you what diseases you may get in the future. And that prediction of probability can be used against you by a lot of people, such as insurers and employers.
Second, the information contained in DNA never disappears. Once I have a blood sample or anything with DNA tissue, such as a hair follicle or a bit of saliva, I never have to see you again to ask permission to test your DNA for, say, a predisposition to a new disease. With no legal restrictions on what people can use DNA for, who's going to stop researchers, employers, or the government from using it?
Q: As far back as 1995, you warned that genetic information would be used to discriminate against those perceived as genetically unfit. Is that a problem today?
A: I think genetic discrimination is a potential problem. It's not yet real because no employers and health-insurance companies that I know of are doing regular genetic screening. It's just too expensive. And there's no good data to prove that you can save as much as you spend by doing the test.
The real problems will come if your genetic information becomes public and every major group that makes decisions about you can use the information. Insurers might raise premiums for a woman who has someone in her family with breast cancer. Or she might refuse to be tested for fear of losing her insurance. Medical schools don't want to spend eight years training you if you are going to get early Alzheimer's. Employers won't want to pick a chief executive with a likelihood of incurable disease. They'll want someone with a clean DNA profile.
The possibilities are endless. Today, there was a statement from John Kerry's campaign that he was in "excellent health." When will we start demanding DNA records for candidates for political office? It's only a matter of time before someone will be stupid enough to say, "Here's my DNA. Analyze away." And then, whoever he's running against will have to too. How far will it go? To the mayor? The local city council? Americans just can't get enough about the private lives of politicians and celebrities.
I also worry about parents getting this kind of information. You can just imagine parents knowing their kid has a gene for math, ballet, or the perfect body. At least some parents will try to trap their kids into utilizing their natural talents. That will not be a pleasant sight.
Q: You clearly believe laws are needed? Do you support the Senate's bill?
A: I helped draft the first bill that was introduced -- Senator Pete Domenici's -- back in 1997. That was based on our 1995 Genetic Privacy Bill and would have required that the individual have control over when DNA is taken and what's done with it.
But the research community was afraid. They feared that it might inhibit research. And so, there were proposals on a parallel track to limit regulation to anti-discrimination. [Director of the National Human Genome Research Institute at the National Institutes of Health] Francis Collins and [President of Celera Genomics] Craig Venter have adopted a strategy to let people collect DNA but to legislate against discrimination.
Q: So you don't think that goes far enough?
A: We think [the problem] starts at the collection. It should be your choice. In a perfect world, I believe we would have no collection of DNA without the authorization of individual. No DNA analysis -- looking for specific genes or chromosomes -- without informed consent of the individual. No disclosure to anyone of the results of the test without explicit authorization. And no storage of the DNA sample, which should be destroyed after the test is done.
Q: But even scaled-back antidiscrimination legislation is stalled. Will we get rules before it's too late?
A: Privacy and patients' rights law usually aren't passed until there has been a horrible abuse. That's what happened -- in reverse -- with the Patriot Act [which increased law-enforcement power and rolled back privacy rights]. That act wasn't written after September 11. It was written long before. And this was law enforcement's opportunity to get what they had always wanted.
The good news is, the [proposed] rules have been around for more than a decade. When necessary, we could put them in place pretty quick. Black covers privacy issues for BusinessWeek Online in her twice-monthly Privacy Matters column