[Weekly Compilation of Presidential Documents Volume 33, Number 29 (Monday, July 21, 1997)]
[Pages 1073-1075]
[Online from the Government Publishing Office, www.gpo.gov]

<R04>
Remarks Announcing Proposed Legislation To Ban Discrimination Based on 
Genetic Screening

July 14, 1997

    Thank you very much. You know, very often when I come into this room 
for an event like this, to stand up for a cause I believe in, by the 
time it's my turn to speak, there is nothing else to say. [Laughter] But 
that has never been more true than it is at this moment. Mary Jo, you 
were terrific, and we thank you. Thank you very much.
    Secretary Shalala, Congresswoman Slaughter, Dr. Collins, the head of 
our genome project, Susan Blumenthal, the head of the Women's Health 
Office at HHS, ladies and gentlemen, thank you for being here.
    I want to say a special word of thanks, too, to Congresswoman Louise 
Slaughter. Both our families have known losses--and hers very recently--
and we appreciate her being here. I love to hear Louise Slaughter talk 
with her beautiful southern accent. The first time I heard she was a 
Congresswoman from New York, I thought it was a misstatement. [Laughter] 
And from my point of view, she's the only Member of Congress from New 
York who speaks without an accent, and I like that. [Laughter]
    The remarkable strides that we have seen in genetic research and 
testing are so important to every American family. Chances are, every 
family represented in this room in our lifetime will have a child, a 
grandchild, a cousin, a niece, a nephew somehow benefited from the work 
of the human genome project, which seemed nothing more than an 
intellectual dream just a few years ago. And one of the things that we 
have to do is to make sure that every American family has a chance to 
benefit from it.
    Secretary Shalala's report which she has issued--it's a remarkable 
report; I commend it to all of you--makes it clear that the scope of 
this era of discovery is truly astonishing. We are literally unlocking 
the mysteries of the human body, finding new and unprecedented ways of 
discovering not only the propensity for it to break down in certain ways 
or lead to certain forms of disease or human behavior but also ways to 
prevent the worst consequences of our genetic structure.

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    And as with every kind of decision like this, there is always the 
possibility that what we learn can not only be used but can be misused. 
And in all of this era of scientific discovery, there is probably no 
greater promise for use or for misuse than in the area of genetic 
testing. Used in the right way, obviously it has the chances to save 
millions of lives and revolutionize health care. And I am proud of our 
aggressive support for the human genome project.
    But it's also clear that it is wrong for insurance companies to use 
genetic information to deny coverage. It's happened before. It happened 
in the 1970's with some African-Americans who carried sickle cell 
anemia. And it can happen in many other ways. An enormous number--
percentage of American women get breast cancer at some time during their 
lives. An enormous percentage of American men get prostate cancer at 
some time during their lives. There are other kinds of medical problems 
that occur with increasing frequency and that we'll see more and more as 
we grow older as a population.
    And now we see the consequences already of this kind of 
discrimination. It's wrong when someone avoids taking a test that could 
save a life just because they're so afraid that the genetic information 
will be used against them. And too many women today fear that that will 
happen when they decide to test or to not be tested to see if they carry 
the gene for breast cancer.
    Now, this kind of discrimination is--really it's more than wrong; 
it's a life-threatening abuse of a potentially life-saving discovery. 
And I can't help commenting that in the United States, it is a direct 
consequence of the fact that we are the only advanced country in the 
world that has chosen to finance the health care of our citizens through 
a private insurance system that is completely optional and does not 
cover every one. So that to be fair, the insurance companies themselves 
face some dilemmas that can only be fixed by the law, by a restatement 
of the public interest, so that none are treated differently from others 
if they make the decision to do what is morally right. And I think 
that's important to point out. I tried to fix it once and took a lot of 
criticism, but I'm not--[laughter]--I'm not ashamed that I did. If I 
could fix it tomorrow, I would fix it tomorrow, because this is not 
right.
    But we have done what we could to try to, step by step, change this 
structure. A year ago, we took the first step when Congress passed and I 
signed the Kennedy-Kassebaum bill, which prohibits group health plans 
from using genetic information to deny coverage. And today my 
administration is sending legislation to Congress that will ban all 
health plans, group and individual, from denying coverage or from 
raising premiums on the basis of genetic tests. It will prohibit all 
health plans from disclosing genetic information that could be misused 
by other insurers. But it will protect researchers' ability to make the 
best use of this vitally important tool.
    It builds on the solid foundation of Congresswoman Slaughter and 
Senator Olympia Snowe's bill, and I'm pleased to say that Senator Frist 
from Tennessee and Senator Jeffords from Vermont have announced that 
they will share our commitment and they will work with us to pass 
bipartisan legislation to ban discrimination based on genetic tests.
    This is an example of the step-by-step approach we are now taking 
that I will not be satisfied with until we have made sure that every 
American family has the health care they need to thrive. We've already 
ensured that a job change or an illness in the family doesn't mean 
automatically losing your health insurance. We've made it easier for 
self-employed people to buy health insurance for their families. The 
balanced budget agreement I have reached with the leaders of Congress, 
that was voted for in its outline by overwhelming majorities in both 
parties and both Houses, will extend care to millions and millions of 
uninsured children. It will ensure, as Secretary Shalala said, that more 
older women can have mammograms. It will protect Medicare and Medicaid.
    But what we're here today to say is something very simple and yet 
profound. We cannot afford to let our progress either in science or in 
extending health care to the American people to be undermined by the 
misuse of what is a miracle of genetic testing. Americans should never 
have to choose between saving their health insurance and taking tests 
that could save their lives. With these efforts,

[[Page 1075]]

we will ensure at least that no American ever has to make that choice 
again.
    Thank you very much.

Note: The President spoke at 2:55 p.m. in the East Room at the White 
House. In his remarks, he referred to Mary Jo Ellis Kahn, breast cancer 
survivor and member, National Action Plan on Breast Cancer; and Francis 
S. Collins, director, National Center for Human Genome Research.