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Office of the Press Secretary

For Immediate Release February 8, 2000
                           PRESS BRIEFING BY
                       ON GENETIC DISCRIMINATION

                           The Briefing Room

1:33 P.M. EST

MR. KENNEDY: A short while ago, the President signed an historic executive order to ban discrimination on the basis of genetic information by federal agencies. And here to provide additional information is a senior administration official. Thank you.

SENIOR ADMINISTRATION OFFICIAL: Good afternoon. Just a few short minutes ago, the President participated in an event at the American Association for the Advancement of Sciences to sign an executive order that would prohibit any genetic testing for the purposes of hiring, promoting or placing employees within every federal agency and department employing civilian employees. This executive order is the result of months of work with all the agencies throughout the federal government, but particularly with the National Institute of Genome Research, with Francis Collins, and the Department of Health and Human Services, as well as the EEOC and the Department of Labor, OPM and every agency that has been in any way significantly affected by this executive order.

Many of you know that this action is on the heels of concerns about, and extraordinary excitement for, the potentials of research in gene therapy. And the unmatched, probably unparalleled potentials in this area are such that the President outlined them in the State of the Union in some detail, as a matter of fact, and again today, as did Francis Collins.

The concern with this executive order and the reason, the rationale behind it is there is a growing concern within the consumer community as well as in the research community that there is an increasing concern by employees and Americans as a whole about the potential misuse of genetic testing -- so much so that those who may well benefit from genetic testing are suggesting to many people that they are hesitating to undergo genetic testing for fear that that information will be misused, both in terms of employment and in terms of health insurance.

The President has raised this issue before. In fact, he goes back to talk about the perils and potentials of biomedical research back to a Morgan State speech that Dr. Collins referenced in 1997. But in this particular action, we're moving ahead. We are hoping the Congress will do the same. Beyond the executive order, the President called on the Congress to pass legislation on Capitol Hill to ensure that all employers, not just federal employers, utilize the same principles and do not utilize genetic information for placement.

I'd like to just make a distinction, now, on this issue and how important it is -- and it's important to make this distinction. Utilizing health care information to determine whether someone can do the job is something that happens all the time, and is appropriate. What is not appropriate is to use genetic testing to determine predisposition for illness. People who have a predisposition for illness, that has in no way any bearing on their ability to perform their tasks at their jobs. And in fact, many people -- all of us in this room -- have a predisposition for some illness. There's no doubt about that. But if someone was going to be utilizing testing to make that determination, and trying to lower costs, I think most people -- and understandably, most all Americans -- would be aghast.

However, in the absence of legislation and this executive order, no such protections do exist in employment. Back in 1996, we did pass legislation in the Kassebaum-Kennedy HPA insurance reform initiative, to ban the use of these types of testing for health insurance underwriting. It applied to group insurance, but not individual insurance. So since that time a number of members, including Congressman Louise Slaughter, as well as Senator Daschle, have introduced comprehensive legislation to finish the job on the health insurance front, and to continue our work on the employment front in a way that is very consistent with the executive order the President released today.

The other issue that the President referenced is his concern about some of the reports on gene therapy trials that have occurred. And he has asked the Secretary to accelerate the NIH's and FDA's work in that regard, to make sure that we can enhance the public's confidence that we're doing everything possible to avoid any mistakes that have occurred previously, or at least have been reported previously.

But again, the focal point of this announcement was on the genetic discrimination in employment. We anticipate -- we have great hope and expectation that Congress will move and act. We had a bipartisan contingent in the event today, and we have a great deal of confidence that we'll be able to get the legislation done as well as the EO implemented.

The EO was signed. It is now formal. We will try to make copies for those who are interested in it. I think it will serve as a model for employers to contemplate for their model practices in the private sector before we get this legislation done.

And with that, why don't I stop and take any questions you may have about today's action.

Q Is it safe to say that the administration is trying to get ahead of the problem, rather than respond to a widespread problem?

SENIOR ADMINISTRATION OFFICIAL: I think that's relatively fair. Genetic testing does occur in a range of different areas. We have genetic testing for breast cancer, for colon cancer, for Huntington's Disease, for diabetes and for other diseases -- for instance, Collins referenced some others today.

Having said that, they are not widespread. They are certainly available. In terms of daily use, they're not used as much as they will be, inevitably, in the years to come. And absolutely this is a preventive action as the President and Francis Collins suggested today. We need to get ahead of this before inappropriate practice get endemic in this society and it becomes harder to address the issue into the future.

I think what's exciting about this initiative is that the scientific and the consumer community are completely endorsing this legislation, and the executive order. And the reason why they are is that the fear of a growing lack of confidence in the public about the use of this information in inappropriate ways. And that has also an impact on the ability to attract people to participate in clinical trials in the ways that can produce advances in medical science and treatments, cures and diagnostics.

Q Were there agencies that were poised to use this kind of testing, whose programs are going to be interrupted or canceled as a result of this executive order?

SENIOR ADMINISTRATION OFFICIAL: I think what the agencies wanted to make certain was that medical information could be used in appropriate ways to determine ability to work in their current task -- when we made the breakthrough in terms of his executive order, when we made that point of demarkation on the issue of predisposition for illnesses that may or may not exist.

In terms of -- I do not know of any agency who had planned to use genetic testing for this purpose. But I will tel you that it is one of those issues where, not because people think that they're doing something wrong, but because they're just using another tool, that if they don't think about it, you could see it becoming a practice that is used and accepted and, before you know it, becomes a practice that people become dependent on. The President wanted to stop any such practice from occurring now and into the future, and he's done that with today's action.

Q Are there other medical privacy issues that you would expect the President to address through executive action in the months ahead?

SENIOR ADMINISTRATION OFFICIAL: Well, we have to finalize the privacy reg, which we anticipate in the next couple of months. We have had an extraordinary response from the private and public sectors on the draft regulation. We will move ahead on that -- March-April time frame I think is what we're looking for. I'll get back to you on the exact dates, but it's around the spring time frame. Genetic discrimination we'll be pushing the Congress to move legislatively this year. We hope it could be certainly before this summer.

I think an orientation to privacy and I think some people look at some of the issues of patient quality and they look at medical errors and some of those initiatives, as well as patient protections. They get wrapped in some of these broader issues of quality protections, consumer information, consumer protections. They all will be high priorities for us this year. I do think, clearly, the patients' bill of rights will be a priority and we think we can get that done this year. Medical errors I anticipate we'll be talking about in the upcoming weeks, in response to the President's request from late last year. So this is going to be a continuation of a high priority for the President.

Q Are you aware of any public or private employer who's adopted a policy like the one the President adopted today?

SENIOR ADMINISTRATION OFFICIAL: Actually, Robert, I do not know. We are going to be working -- we were talking last night of working with the private sector and the employer community to highlight model employers in this regard, to illustrate the commitment of the employer community in these areas. We have absolutely every confidence that there are people who would be very strongly behind such activities. We also are concerned that there may well be some who are not as committed. That's why the only way you ensure these protections are in place will be to pass federal legislation, and that's what we're going to be doing.

Q When you said it's all civilian employees, does that mean that the Pentagon, all the military people at the Pentagon, are not covered by the order? And are there other agencies that are considered military?

SENIOR ADMINISTRATION OFFICIAL: All civilian employees are covered. That's 2.8 million employees. That does not included DOD. All the reference -- there is no specific exemption for DOD in this executive order. The reason is that every time we do executive orders on these types of initiatives in federal law -- and, in fact, going back from the beginning of every executive order -- they don't explicitly cover DOD. DOD generally follows civilian practices then, and we have every anticipation that they will, and DOD has made no indication that they will not. But that's how we always do it with these executive orders -- civil rights laws.

Q Can you just clear up the number of employees covered? I think Joe said in his briefing it was 1.8 million.

SENIOR ADMINISTRATION OFFICIAL: Well, I checked that today; it's 2.8 million -- 2.78 million. I rounded it to 2.8 million.

Q Do they use any genetic testing at DOD, as far as you know?

SENIOR ADMINISTRATION OFFICIAL: I have absolutely no information what DOD is doing. I will tell you that the CIA is coming into compliance; the State Department is coming into compliance. So it would be my thought, if CIA and State Department are, that DOD probably will have no problem in doing so, particularly in the way we've drafted this EO.

Q Does that mean they were using genetic tests at certain levels?

SENIOR ADMINISTRATION OFFICIAL: I don't have information on that, although I think a while back there may have been a case on something. But I don't know current practice at DOD that has utilized genetic testing for placement or hiring or promotion.

Q Are there specific examples of people who have been discriminated against, or had their privacy --

SENIOR ADMINISTRATION OFFICIAL: Yes. We have some -- for those of you who are interested, we have some examples that have been written up. In many cases -- and we'll give you some cites of people who have actually been counseling these people in how to deal with this situation. Actually, on both sides of this, in the one case people who have actually been discriminated, and others who decided not to seek testing because of the fear of discrimination because they know they have family histories and other such issues.

I will say that many of these people do not want to be publicly recognized. You can talk to them, but they don't want to be cited in any significant way, and the reason is that there are not federal protections and they are concerned that either their employers or insurers might discriminate against them. And this really plays into the very issue the President is trying to address today.

Q Can you explain the exception that is described in the fact sheet which says that obtaining or disclosing genetic information about employees is prohibited except when it's necessary to ensure workplace health and safety -- what that exception means?

SENIOR ADMINISTRATION OFFICIAL: I think that's an example of -- I think that was a case that there are cases in which, with informed consent, that there may be an issue, for example, where there's an environmental area in the work force that would create particular health problems to that employee. In other words, they had a genetic predisposition -- not a genetic predisposition -- they had a specific medical condition where genetic tests can show that they would be at particular risk in a particular hazardous work force -- like if you were in a nuclear plant and there was an issue about radiation. But I'm pretty certain that's right, Robert, but I'll get right back to you on that.

Q -- what kind of genetic predisposition might be in appropriate to work there?

SENIOR ADMINISTRATION OFFICIAL: They may be physically unable or less able to work in that particular environmental setting. But I will -- it's a very rare exception issue, but we will give you a specific example subsequent to this briefing.

Q And in all these instances it has to be informed consent?

SENIOR ADMINISTRATION OFFICIAL: Yes. They have to meet the privacy laws and the application of the requirements that we have in the federal legislation.

Q Can you go over the distinction between the predisposition and the actual having -- I'm a little blurry on that.

SENIOR ADMINISTRATION OFFICIAL: Yes, I think that's a very important point. If you have a medical condition where it affects your ability to perform the job, there are current laws that are -- if you can't perform the job, then you can't perform the job. That isn't discrimination.

If, on the other hand, you have a predisposition for an illness -- you may have a 20 percent greater chance, or a 30 percent greater chance, or a 40 percent greater chance to have a disease -- that does not mean that you will have a disease, and it certainly doesn't affect your ability to work at the current time in that place of work. And the very -- the real distinction that we're making here is a current condition and a predisposition for one. And we think that you have to draw the line there in order to be able to deal with these types or potential abuses that could occur in the future and are occurring today.

Q Is there any opposition to this?

SENIOR ADMINISTRATION OFFICIAL: Well, this legislation has been pending for a while, a couple years now. And it either hasn't been a priority, or there's someone opposing it. There have been in the past some insurers and some in the employer community that have opposed this legislation. I don't know what their current standing is. I hope and expect them, after today's announcement, to be more supportive. And we look forward to working with them.

There are a lot of people who do support this in both sectors, both insurance and employers. And we anticipate many of them will be our allies as we move forward in this year's Congress.

Thank you very much.

END 1:50 P.M. EST