|
|
ONLINE FEATURES
Book Reviews
BW Video
Columnists
Interactive Gallery
Newsletters
Past Covers
Philanthropy
Podcasts
Special Reports
BLOGS
Auto Beat
Bangalore Tigers
Blogspotting
Brand New Day
Byte of the Apple
Economics Unbound
Eye on Asia
Fine On Media
Green Biz
Hot Property
Investing Insights
Management IQ
NEXT: Innovation
NussbaumOnDesign
Tech Beat
Working Parents
TECHNOLOGY
J.D. Power Ratings
Product Reviews
Tech Stats
Wildstrom: Tech Maven
AUTOS
Home Page
Auto Reviews
Classic Cars
Car Care & Safety
Hybrids
INNOVATION
& DESIGN Home Page Architecture Brand Equity Auto Design Game Room SMALLBIZ Smart Answers Success Stories Today's Tip INVESTING Investing: Europe Annual Reports BW 50 S&P Picks & Pans Stock Screeners Free S&P Stock Report SCOREBOARDS Hot Growth 100 Mutual Funds Info Tech 100 S&P 500 B-SCHOOLS Undergrad Programs MBA Blogs MBA Profiles MBA Rankings Who's Hiring Grads | |
APRIL 1, 2004
By Jane Black Keeping Snoops Out of Your Genes Safeguarding your DNA is a huge 21st century privacy issue, says author George Annas. So why is the government sitting on its hands? In an election year, only vote-getting legislation seems to get Congress' attention. So I suppose it comes as no surprise that an important House bill, the Genetic Nondiscrimination in Health Insurance & Employment Act, has quietly been shunted -- once again -- to the bottom of the agenda. The bill, sponsored by Representative Louise Slaughter (D-N.Y.), would, as the name suggests, forbid employers from using genetic information to make hiring decisions or insurers from denying coverage or raising premiums. 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
BW MALL
SPONSORED LINKS
Buy a link now!Get BusinessWeek directly on your desktop with our RSS feeds.  Add BusinessWeek news to your Web site with our headline feed. Click to buy an e-print or reprint of a BusinessWeek or BusinessWeek Online story or video. To subscribe online to BusinessWeek magazine, please click here. Learn more, go to the BusinessWeekOnline home page  | | |
 Copyright 2004, by The McGraw-Hill Companies Inc. All rights reserved.Terms of Use | Privacy Notice |
Printer-Friendly Version
