Banning Genetic Discrimination

[Guest guest]

(This was sent to me from the Office of Disability/The White House and I

feel has an important place for us with CMT)

Below please find a summary fact sheet about genetic discrimination and

an Executive Order signed this week by President Clinton. This is a

hugely

important issue that I hope many of you will begin to follow. So far,

the

discussions of genetic discrimination have been largely in the " pure

science " field, in relation to the human genome project. The basic

issue

is this: scientists are now mapping the entire human genetic code. This

presents the possibility of amazing technological advance and

improvement

of quality of life. But, as President Clinton emphasized this week, it

also poses dangers. Think of it as pre-disability discrimination. All

of

you I presume are aware of the basic non-discrimination concepts of the

ADA, which prohibits discrimination on the basis of disability. With

the

mapping of the human genome, tests will be able to indicate individuals'

likelihood for acquiring various conditions -- i.e. " becoming " a person

with a disability.

Here are a couple of examples. What this means is that an employer

could

do a simple, inexpesnive test to figure out whether a prospective

employee

has a disposition for something such as cancer or MS, and based on that

information could choose not to hire such an employee because of the

potential difficulties that condition could pose. This could also apply

to

parents. If, for example, a parent is a (passive) carrier of a gene

that

would likely be passed on to a child, an employer could discriminate

against the parent -- even though he or she would never acquire the

condition him- or herself.

While President Clinton supports the scientific research, he wants to

ensure that people don't use the data to harm others by discriminating

against people for the possibility of future disabilities. The

executive

order discribed below " prohibits every federal department and agency

from

using genetic information in any hiring or promotion action. " The

President also endorses legislation that " would extend these protections

to

the private sector and to individuals purchasing health insurance. "

The Equal Employment Opportunity Commission, Department of Labor, and

the

Human Genome Project were among the leaders in developing this executive

order and are great sources of information. I'm also happy to follow up

with any of you on this issue to help in any way I can.

===========================================

PRESIDENT CLINTON TAKES HISTORIC ACTION TO BAN GENETIC

DISCRIMINATION IN THE FEDERAL WORKPLACE

February 8, 2000

Today, at an event at the American Academy of Sciences, President

Clinton

will sign an executive order that prohibits every federal department and

agency from using genetic information in any hiring or promotion action.

This historic action will ensure that critical health information from

genetic tests is not used against federal employees. The President

today

will also endorse the Genetic Nondiscrimination in Health Insurance and

Employment Act of 1999, introduced by Senator Daschle and Congresswoman

Slaughter, which would extend these protections to the private sector

and

to individuals purchasing health insurance. Finally, the President will

state his strong belief that efforts to find genetic cures for disease

must

not undermine vital patient protections, and he will ask the Secretary

of

Health and Human Services to expedite FDA and NIH reviews of gene

therapy

guidelines and regulations.

AMERICANS FEAR THAT THEIR GENETIC INFORMATION WILL BE MISUSED. Progress

in

genetics has helped researchers and health care providers to detect and

prevent health disorders; however, it can also be misused to

discriminate

against or stigmatize individuals. Some employers may try to use genetic

tests to discriminate against workers -- even those who have not yet or

who

may never show signs of illness -- in order to avoid increased costs

associated with workers who are genetically predisposed to particular

ailments.

+ GENETIC DISCRIMINATION IS REAL. In a 1996 study published in

Science

, 15 percent of individuals at risk of developing a genetic condition

said

that they had been asked questions about genetic diseases on job

applications. Thirteen percent of the respondents reported that they or

another family member had been denied a job or fired from a job because

of

a genetic condition in the family.

+ FEAR OF DISCRIMINATION IS WIDESPREAD. Confidentiality of genetic

test results is a major concern for the public. A 1997 study by the

National Center for Genome Resources found that 63 percent of people

would

not take genetic tests if employers could access the results -- and that

almost 50 percent of people believe that most employers will ask

employees

to take genetic tests in the future.

PREVENTING GENETIC DISCRIMINATION IN THE WORKPLACE. Today, the

President

will sign an executive order that prohibits every agency in the Federal

government from using genetic testing in any hiring or promotion action.

This executive order, endorsed by the American Medical Association, the

American College of Medical Genetics, the National Society of Genetic

Counselors, and the Genetic Alliance, will:

+ PROHIBIT FEDERAL EMPLOYERS FROM REQUIRING OR REQUESTING GENETIC

TESTS

AS A CONDITION OF BEING HIRED OR RECEIVING BENEFITS. Employers would

not

be able to request or require employees to undergo genetic tests in

order

to evaluate an employee's ability to perform his or her job.

+ PROHIBIT FEDERAL EMPLOYERS FROM USING PROTECTED GENETIC

INFORMATION

TO CLASSIFY EMPLOYEES IN A MANNER THAT DEPRIVES THEM OF ADVANCEMENT

OPPORTUNITIES. Employers would not be able to deny employees promotions

or

overseas posts because of a genetic predisposition for certain

illnesses.

+ PROVIDE STRONG PRIVACY PROTECTIONS TO ANY GENETIC INFORMATION USED

FOR MEDICAL TREATMENT AND RESEARCH. Under the EO, obtaining or

disclosing

genetic information about employees or potential employees is

prohibited,

except when it is necessary to provide medical treatment to employees,

ensure workplace health and safety, or provide occupational and health

researchers access to data. In every case where genetic information

about

employees is obtained, it will be subject to all Federal and state

privacy

protections.

PRESIDENT CALLS ON CONGRESS TO PROTECT THE PRIVATE GENETIC INFORMATION

OF

ALL AMERICANS. Today, President Clinton will endorse the Genetic

Nondiscrimination in Health Insurance & Employment Act of 1999,

introduced

by Senator Daschle and Congresswoman Slaughter. This bill would extend

the

protections for genetic information included in the President's

executive

order to the private sector. In 1996, the President signed the Health

Insurance Portability and Accountability Act (HIPAA), which prevents

group

health insurers from using genetic information to deny individuals

health

insurance benefits. The Daschle-Slaughter legislation finishes the job

begun by HIPAA by ensureing that genetic information used to help

predict,

prevent, and treat diseases will not also be used to discriminate

against

Americans seeking employment, promotion, or health insurance.

AT THE PRESIDENT'S REQUEST, HHS ACCELERATES THEIR REVIEW OF PATIENT

PROTECTIONS IN GENE THERAPY. Today, President Clinton will also address

recent reports on lapses in gene therapy clinical trials. Specifically,

that researchers failed to comply with federal regulations requiring the

reporting of any serious illness or death, and patients may have been

misinformed about the risks associated with the trials. At the

President's

request, the Secretary of Health and Human Services will instruct FDA

and

NIH to expedite their review of gene therapy guidelines and regulations

--

to determine whether the current informed consent requirements need to

be

strengthened, and to ensure that information about these trials is

shared

with the public.

BUILDING ON THE CLINTON-GORE ADMINISTRATION'S STRONG COMMITMENT TO

PROTECTING PRIVATE GENETIC INFORMATION. Since 1997, the President and

Vice

President have called for legislation that will guarantee that Americans

who are self-employed or otherwise buy health insurance themselves will

not

lose or be denied that health insurance because of genetic information.

Under the Clinton-Gore Administration, the Human Genome Research Project

has made swift progress, and is on schedule to finish a draft of the

human

genome by April of 2000. While these advances promise great benefits,

they

also carry potential perils. Today's actions are part of the

Administration's longstanding effort to ensure that we harness

scientific

advances to our most cherished values.