Genetic Nondiscrimination in Health Insurence and Employment Act.

[Guest guest]

Hi, I am forwarding this to everyone. RP research is being done and making a lot

of head way in the lines of genetic science. Dr. Buckner's team is one group

that has identified genetic markers in RP. Specifically an antigen (protien)

that is found only in the ears, nose and trachea. Please, take a moment and read

through this message. It affects us all.

Thank You

R.

National Organization for Rare Disorders

LEGISLATIVE ALERT

GENETIC NONDISCRIMINATION IN HEALTH INSURANCE

AND EMPLOYMENT ACT

S. 318/H.R. 602

Background

Senate Democratic Leader Tom Daschle (D-SD) and Representative Louise Slaughter

(D-NY) have recently re-introduced their Genetic Non-Discrimination in Health

Insurance and Employment Act. Senators Tom Harkin (D-IA), Dodd

(D-CT) and Kennedy (D-MA), as well as Representative Constance Morella

(R-MD) joined them in support of the legislation. Both S. 318 and H.R. 602 would

prevent health insurers from using predictive genetic information to “deny,

cancel, or change the rates and conditions of insurance coverage.” The bills

would further prohibit the use of predictive genetic information by employers in

hiring, firing, promotion and other employment-related decisions.

Problem

According to the National Society of Genetic Counselors, far fewer Americans are

opting to take genetic tests than had originally been expected. Many people who

would otherwise take a genetic test are deciding against doing so for fear of

genetic discrimination. Scientists are also finding it more difficult to recruit

participants in genetic research for the same reason.

In a recent speech before the Institute for Genome Research and the American

Association for the Advancement of Science, Representative Slaughter outlined

her reasons why genetic discrimination should be illegal:

§ Genetic science is not yet fully understood. Over time, researchers

will further refine our understanding of genes, as well as the interplay among

genes and the impact of the environment. Using genetic information to

discriminate in the workplace is wrong - especially in the context of

determining who should get a job, or who should be eligible for affordable

insurance.

§ Having a predictive gene does not necessarily mean you will ever get

sick. And even if you do, the disorder might not develop for 10, 20, or 30

years. No one should be passed over for a promotion at work or lose their

insurance coverage simply because they might get sick someday.

§ We all have genetic flaws. Dr. Francis , Director of the

National Human Genome Project, is frequently quoted as saying every human being

is estimated to have between 5 and 50 significant genetic mutations, making us

all ultimately unemployable and uninsurable. By allowing genetic discrimination

to persist, we effectively penalize the people who happen to have the genes that

were discovered first.

What the Genetic Nondiscrimination and Health Insurance and Employment Act Does

a.. Covers all health insurance programs, including those regulated by the

federal government, state-regulated plans and the individual market;

b.. Prohibits insurers from restricting enrollment or changing premiums on the

basis of predictive genetic information or genetic services;

c.. Bans health plans and insurers from requesting or requiring that an

individual take a genetic test, or reveal the results of such a test;

d.. Prohibits health plans and insurers from pursuing or being provided

information on predictive genetic information or genetic services;

e.. Covers employers, employment agencies, labor organizations and training

programs;

f.. Prevents discrimination in hiring, compensation and other personnel

processes

g.. Prohibits employers from requiring or requesting disclosure of predictive

genetic information and allow genetic testing only to monitor the averse effects

of hazardous workplace exposures, and,

h.. Requires predictive information possessed by an employer to be

confidentially maintained and disclosed only to the employee upon request, or to

researchers (under the “Common Rule”).

Genetic Nondiscrimination Issue Brief

March 2001

Page 2

NORD’s Position

The abuse of genetic information has the potential to destroy individuals'

careers and do long-term damage to their and their families' health. We must err

on the side of caution and ban all genetic discrimination in health insurance

and employment. NORD wholeheartedly supports The Genetic Nondiscrimination in

Health Insurance and Employment Act.

Whom We Represent

NORD is a federation of approximately 140 voluntary health organizations and

nearly 70,00 individuals, researchers and healthcare providers serving people

with rare “orphan” diseases. NORD is committed to the identification, treatment

and cure of rare disorders through programs of education, advocacy, research and

service.

For More Information

Contact: Diane E. Dorman, Senior Director for Public Policy; phone: (301)

421-0018; email: ddorman@....

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H.R.602

Sponsor: Rep Slaughter, Louise McIntosh (introduced 2/13/2001)

Title: To prohibit discrimination on the basis of genetic information with

respect to health insurance.

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COSPONSORS(229), ALPHABETICAL

Rep Abercrombie, Neil - 2/13/2001

Rep Ackerman, L. - 2/13/2001

Rep , H. - 2/13/2001

Rep s, E. - 3/26/2001

Rep Baca, Joe - 3/26/2001

Rep Bachus, Spencer - 3/29/2001

Rep Baird, - 3/8/2001

Rep Baker, H. - 2/27/2001

Rep Baldacci, Elias - 2/13/2001

Rep Baldwin, Tammy - 2/13/2001

Rep Barcia, A. - 3/28/2001

Rep Barrett, M. - 2/28/2001

Rep Bentsen, Ken - 2/13/2001

Rep Berkley, Shelley - 2/13/2001

Rep Berman, L. - 2/13/2001

Rep Berry, n - 3/26/2001

Rep Bishop, Sanford D. Jr. - 3/29/2001

Rep Blagojevich, Rod R. - 2/13/2001

Rep Blumenauer, Earl - 2/13/2001

Rep Bonior, E. - 2/13/2001

Rep Bono, - 3/28/2001

Rep Borski, A. - 2/13/2001

Rep Boucher, Rick - 2/13/2001

Rep Boyd, - 2/13/2001

Rep Brady, - 2/13/2001

Rep Brown, Corrine - 3/26/2001

Rep Brown, Sherrod - 3/26/2001

Rep Burton, Dan - 2/13/2001

Rep Calvert, Ken - 2/13/2001

Rep Capps, Lois - 2/13/2001

Rep Capuano, E. - 2/13/2001

Rep Cardin, L. - 2/13/2001

Rep Carson, Brad - 3/26/2001

Rep Carson, - 2/13/2001

Rep Christensen, Donna M. - 2/13/2001

Rep Clay, Wm. Lacy - 4/3/2001

Rep Clayton, Eva M. - 3/28/2001

Rep Clement, Bob - 3/28/2001

Rep Clyburn, E. - 3/28/2001

Rep Condit, A. - 3/28/2001

Rep Conyers, , Jr. - 3/29/2001

Rep Costello, Jerry F. - 2/13/2001

Rep Coyne, J. - 2/13/2001

Rep Cramer, E. (Bud) Jr. - 2/13/2001

Rep Crowley, ph - 3/22/2001

Rep Cummings, Elijah E. - 3/28/2001

Rep , Danny K. - 2/13/2001

Rep , Jim - 2/27/2001

Rep DeFazio, A. - 2/13/2001

Rep DeGette, - 2/13/2001

Rep Delahunt, D. - 2/13/2001

Rep DeLauro, L. - 2/13/2001

Rep Dicks, Norman D. - 2/13/2001

Rep Dingell, D. - 3/28/2001

Rep Doggett, Lloyd - 2/27/2001

Rep Doyle, F. - 2/13/2001

Rep Duncan, J., Jr. - 2/13/2001

Rep , Chet - 2/13/2001

Rep Engel, Eliot L. - 3/8/2001

Rep Eshoo, G. - 2/13/2001

Rep Etheridge, Bob - 2/13/2001

Rep , Lane - 2/13/2001

Rep Farr, Sam - 2/13/2001

Rep Fattah, Chaka - 2/13/2001

Rep Ferguson, Mike - 3/8/2001

Rep Filner, Bob - 2/13/2001

Rep Foley, Mark - 3/28/2001

Rep Ford, Harold, Jr. - 2/13/2001

Rep , Barney - 2/13/2001

Rep Frelinghuysen, Rodney P. - 2/13/2001

Rep Frost, - 2/13/2001

Rep Gallegly, Elton - 2/13/2001

Rep Gephardt, A. - 2/13/2001

Rep Gilchrest, Wayne T. - 2/13/2001

Rep Gilman, A. - 2/13/2001

Rep , A. - 3/26/2001

Rep Gordon, Bart - 4/3/2001

Rep Granger, Kay - 3/29/2001

Rep Green, Gene - 2/13/2001

Rep Greenwood, C. - 3/26/2001

Rep Gutierrez, V. - 3/26/2001

Rep Hall, Tony P. - 2/13/2001

Rep Harman, Jane - 3/20/2001

Rep Hart, A. - 4/24/2001

Rep Hastings, Alcee L. - 3/28/2001

Rep Hilliard, Earl F. - 2/13/2001

Rep Hinchey, Maurice D. - 2/13/2001

Rep Hinojosa, - 3/26/2001

Rep Hoeffel, ph M. - 2/13/2001

Rep Holden, Tim - 2/13/2001

Rep Holt, Rush D. - 2/13/2001

Rep Honda, M. - 4/3/2001

Rep Hooley, Darlene - 2/13/2001

Rep Horn, - 2/13/2001

Rep Hoyer, Steny H. - 3/26/2001

Rep Hyde, Henry J. - 3/28/2001

Rep Inslee, Jay - 2/13/2001

Rep Israel, Steve - 5/1/2001

Rep , L., Jr. - 2/28/2001

Rep -Lee, Sheila - 3/26/2001

Rep Jefferson, J. - 2/13/2001

Rep , Eddie Bernice - 3/28/2001

Rep , Tubbs - 2/13/2001

Rep Kanjorski, E. - 2/13/2001

Rep Kaptur, Marcy - 2/13/2001

Rep , Sue W. - 2/13/2001

Rep Kennedy, J. - 3/26/2001

Rep Kildee, Dale E. - 2/13/2001

Rep Kilpatrick, Carolyn C. - 2/13/2001

Rep Kind, Ron - 3/29/2001

Rep King, T. - 2/13/2001

Rep Kleczka, Gerald D. - 2/13/2001

Rep Kolbe, Jim - 2/13/2001

Rep Kucinich, Dennis J. - 2/13/2001

Rep LaFalce, J. - 2/27/2001

Rep Lampson, Nick - 2/13/2001

Rep Langevin, R. - 3/20/2001

Rep Lantos, Tom - 2/13/2001

Rep Larson, B. - 2/13/2001

Rep Lee, Barbara - 2/13/2001

Rep Levin, Sander M. - 2/13/2001

Rep , - 3/26/2001

Rep Lipinski, O. - 3/22/2001

Rep LoBiondo, A. - 3/20/2001

Rep Lofgren, Zoe - 2/13/2001

Rep Lowey, Nita M. - 2/13/2001

Rep Luther, Bill - 2/13/2001

Rep Maloney, Carolyn B. - 2/13/2001

Rep Maloney, H. - 2/13/2001

Rep Markey, J. - 2/13/2001

Rep Mascara, - 2/13/2001

Rep Matsui, T. - 2/13/2001

Rep McCarthy, Carolyn - 2/13/2001

Rep McCarthy, - 2/13/2001

Rep McCollum, Betty - 2/13/2001

Rep McDermott, Jim - 2/13/2001

Rep McGovern, P. - 2/13/2001

Rep McHugh, M. - 2/13/2001

Rep McIntyre, Mike - 4/24/2001

Rep McKinney, A. - 3/22/2001

Rep McNulty, R. - 2/13/2001

Rep Meehan, T. - 2/13/2001

Rep Meek, P. - 2/13/2001

Rep Meeks, W. - 2/13/2001

Rep Menendez, - 2/13/2001

Rep Millender-Mc, ita - 2/13/2001

Rep , - 2/13/2001

Rep Mink, Patsy T. - 2/13/2001

Rep Moakley, ph - 2/13/2001

Rep Mollohan, Alan B. - 3/29/2001

Rep , Dennis - 2/13/2001

Rep Moran, P. - 2/13/2001

Rep Morella, Constance A. - 2/13/2001

Rep Murtha, P. - 2/13/2001

Rep Nadler, Jerrold - 2/13/2001

Rep Napolitano, Grace F. - 2/13/2001

Rep Neal, E. - 3/28/2001

Rep Ney, W. - 2/13/2001

Rep Norton, Eleanor Holmes - 2/13/2001

Rep Oberstar, L. - 2/13/2001

Rep Obey, R. - 2/13/2001

Rep Olver, W. - 2/13/2001

Rep Ortiz, Solomon P. - 3/29/2001

Rep Owens, Major R. - 3/22/2001

Rep Pallone, , Jr. - 2/13/2001

Rep Pascrell, Bill, Jr. - 2/13/2001

Rep Pastor, Ed - 3/26/2001

Rep Payne, M. - 2/13/2001

Rep Pelosi, - 2/13/2001

Rep , Collin C. - 3/29/2001

Rep Phelps, D. - 2/13/2001

Rep Price, E. - 2/13/2001

Rep Rahall, Nick J., II - 3/29/2001

Rep Rangel, B. - 2/13/2001

Rep Reyes, Silvestre - 2/13/2001

Rep Rivers, Lynn N. - 2/13/2001

Rep , Ciro - 3/29/2001

Rep Roemer, Tim - 2/28/2001

Rep Ros-Lehtinen, Ileana - 2/13/2001

Rep Rothman, Steve R. - 4/24/2001

Rep Roukema, Marge - 2/13/2001

Rep Roybal-Allard, Lucille - 2/13/2001

Rep Rush, Bobby L. - 2/13/2001

Rep Sabo, Olav - 2/27/2001

Rep , Loretta - 3/20/2001

Rep , Bernard - 2/13/2001

Rep Sandlin, Max - 2/13/2001

Rep Sawyer, Tom - 2/27/2001

Rep Schakowsky, Janice D. - 2/13/2001

Rep Schiff, Adam B. - 3/20/2001

Rep , C. - 2/13/2001

Rep Serrano, E. - 2/13/2001

Rep Shays, - 3/29/2001

Rep Sherman, Brad - 2/13/2001

Rep Shows, Ronnie - 3/29/2001

Rep Sisisky, Norman - 2/13/2001

Rep Skelton, Ike - 2/13/2001

Rep , Adam - 2/13/2001

Rep Snyder, Vic - 2/13/2001

Rep Solis, Hilda L. - 3/8/2001

Rep Spratt, M., Jr. - 2/13/2001

Rep Stark, Fortney Pete - 2/13/2001

Rep Stenholm, W. - 2/13/2001

Rep Strickland, Ted - 2/13/2001

Rep Stupak, Bart - 2/13/2001

Rep Tauscher, Ellen O. - 2/13/2001

Rep , H. - 2/27/2001

Rep , Bennie G. - 2/13/2001

Rep , Mike - 3/29/2001

Rep Thurman, L. - 2/13/2001

Rep Tierney, F. - 2/13/2001

Rep Traficant, A., Jr. - 2/13/2001

Rep , Jim - 3/8/2001

Rep Udall, Mark - 2/13/2001

Rep Udall, Tom - 2/13/2001

Rep Upton, Fred - 3/29/2001

Rep Velazquez, Nydia M. - 3/28/2001

Rep Visclosky, J. - 2/13/2001

Rep Walsh, T. - 2/13/2001

Rep Waters, Maxine - 2/13/2001

Rep Watt, Melvin L. - 2/27/2001

Rep Waxman, Henry A. - 2/13/2001

Rep Weiner, D. - 2/13/2001

Rep Wexler, - 2/13/2001

Rep Wicker, Roger F. - 3/26/2001

Rep Wolf, R. - 2/13/2001

Rep Woolsey, Lynn C. - 2/13/2001

Rep Wu, - 3/28/2001

Rep Wynn, Albert - 3/26/2001

Diane E. Dorman, Sr. Dir. for Public Policy

National Organization For Rare Disorders - Washington Office

3907 Blackburn Lane, #22, Burtonsville, MD 20866

Office/, Fax/, Cell/

ddorman@...