JEFFREY BROWN: As scientific research brings ever-greater knowledge of our genetic make-up, all this new personalized data has also raised privacy and other legal concerns.
Yesterday, the Senate unanimously passed what’s being touted as landmark legislation in this area. The House is expected to approve it next week, and President Bush has said he’ll sign it into law.
The Genetic Information Nondiscrimination Act prohibits insurers from denying coverage to patients and employers from making hiring and other decisions based on genetic test results.
Here to tell us more is Francis Collins, director of the National Human Genome Research Institute at the National Institutes of Health. That’s a mouthful. Sorry, I got it out.
FRANCIS COLLINS, National Human Genome Research Institute: You got through it.
JEFFREY BROWN: Thanks for joining us.
FRANCIS COLLINS: It’s great to be here.
JEFFREY BROWN: Explain the problem that required an act like this.
FRANCIS COLLINS: Well, you could say this is the bill for people with DNA, and that would be all of us, because that’s our instruction book. It’s also the bill for people with DNA that has glitches in it, and that would also be all of us.
We all have little places in our instruction book, places at risk for something, some of them fairly dramatic, some of them less so.
The idea that that information, which none of us get to choose, which you simply inherit from your parents, might be used to deny you coverage, in terms of health care, or to be used in a way that would deny you access to a job or a promotion is really not a comfortable situation for people to contemplate. And that’s been pretty clear now for more than a decade.
And so the real solution here really required this kind of legislation that would say, “That information just ought to be off the table when those decisions are being made.”
JEFFREY BROWN: There are cases, documented cases, where this has happened, where there has been misuse, or are we mostly looking ahead to the future here?
FRANCIS COLLINS: There are some documented cases, not a huge number, in part because some of the people who’ve been discriminated against are pretty reluctant to step forward and talk about it for fear that it might happen in even larger ways.
And, also, most of us haven’t yet had the chance to have a genetic test conducted on us, so we haven’t yet faced that discriminatory risk. But that’s coming.
We are in the midst of a deluge of discovery, and a very exciting one, about genetic risk factors for diabetes, for heart disease, for cancer, for asthma, for high blood pressure, all of these conditions that have been pretty mysterious. And that’s going to put us in a position, if we’re interested, in finding out our own situation to plan prevention better.
Federal law follows state action
JEFFREY BROWN: All right, well, let me come back to some of that. But on this particular law, I know a number of states have laws on the books to prevent discrimination in this area. What does this federal law do?
FRANCIS COLLINS: Well, the states did take action, and I think they deserve a lot of credit for that. More than 40 states have legislation covering either health insurance or the workplace or both.
But the laws are variable, in terms of their strength of coverage, and there are some loopholes in some of them, and there are exclusions that actually provide no protection, then, to some citizens of those states.
And it doesn't make a lot of sense to have this kind of civil rights issue -- and I think that's really what this is -- be something that is different when you cross a state line. This really ought to be a federal plan.
So I'm delighted. And a great deal of credit should be given to those in the Congress who have pushed this forward now to achieve the passage of this bill.
JEFFREY BROWN: Is the acquisition of information not allowed or is it how it's used once it's acquired?
FRANCIS COLLINS: The main thrust of this bill is to deny the opportunity to misuse the information. There are some privacy elements in here, as well. Much of that is covered by HIPAA, which was passed now a long time ago.
But, basically, the main thrust of this is to say that, if a health insurer actually gets access to this information, which they might very well, because they are looking at the medical record for reimbursement, they're not allowed to use that information in setting a premium.
And similarly with an employer, if the employer happens to gain the information, although they're not supposed to ask for it, they may not use it in hiring, firing and promotion decisions.
Risks of future litigation
JEFFREY BROWN: Now, there was opposition, particularly from employment groups, employers. And the main fear, of course, is over the possibility of lawsuits coming at them and exactly how much they need to do to avoid that or to respond to the legislation. Explain the concern here.
FRANCIS COLLINS: Well, I think employers are, after all, often in a difficult position, trying to run businesses and trying to do the right thing.
And I think the concern was that somebody who was fired because of poor job performance might turn around and say, "Well, actually, it was because of this DNA test that showed I had a risk of diabetes, and therefore that's why they let me go, and I'm going to file a big, expensive lawsuit."
And that is a serious concern. You wouldn't want to inspire that kind of misuse of the legislation.
The legislation is very carefully written. And especially over the last couple of weeks, I think a very good compromise was reached that still provides the kind of protection that people need without the risk of those kinds of lawsuits.
And I would say the states that have had those bills, there hasn't been a single example of such an inappropriate lawsuit filed so far.
JEFFREY BROWN: So we'll have to see at this point, but it is possible some of this will still be in the courts to decide.
FRANCIS COLLINS: It may, although I think, actually, because this is a practice which has not really found its way into health insurance or the workplace in a big way, it's not as if people are being asked to stop doing things they're already doing, I think this basically sets a very strong message in place, saying, "Let's just not go there."
And I think that will be a very strong deterrent.
Family history guides testing
JEFFREY BROWN: All right, now, come back to this new world of personalized medicine you were starting to talk about. What types of things can people find out now? And how much more common is it to find out in more normal circumstances or preventative-type situations?
FRANCIS COLLINS: Well, one genetic test that we've been using for quite a while and which actually doesn't cost any money at all is one's family medical history. What conditions have your relatives had?
That's actually a pretty useful prediction of what your own personal risks might be. We haven't used it as effectively as we might, and we ought to do a better job of that, and it is covered under this bill. You can't use that to discriminate, either.
But as we're learning more about specific glitches in DNA that are associated with diseases, there are certainly lots of people who have now had the chance, for instance, in a family with a lot of colon cancer, to find out whether they're at risk, as well.
Because if you are for a disease like colon cancer, there's something you can do about it: Start that colonoscopy program maybe earlier than age 50 and maybe do it every year, instead of every five years, if you're at very high risk. We know that helps people in that circumstance.
Most of us, though, maybe don't live in families that have had that kind of dramatic history. But we are now being faced with the opportunity of finding out the more subtle risks.
There are companies now marketing to the public directly the opportunity to find out your risks for maybe a dozen or more diseases. And the idea here is that that might allow you to personalize your own approach to staying well.
And that's a good idea. We wish that we had better data about exactly how to do that and data that would show us really that it works, that it improves outcomes. But we're moving in that direction very quickly.
From 'sick care' to health care
JEFFREY BROWN: And your sense is that the new legislation will allow or encourage more people to come forward and try the things at the preventative stage?
FRANCIS COLLINS: Well, we have this vision, and I think it's a very wonderful vision, because our health care system really ought to be about health instead of being a sick care system, that treats people with far advanced disease.
How could we do that? How could we do a better job of prevention? One-size-fits-all is probably not the answer. This approach provides great opportunities.
But that cloud on the horizon of genetic discrimination had made a lot of people wonder, "Will we ever really be able to get there?" That cloud has just been pushed off the table. And that's a really wonderful thing to say.
JEFFREY BROWN: All right, Dr. Francis Collins, thanks very much.
FRANCIS COLLINS: Thank you. It's great to be with you.