Hey, I might even beat Margolis in posting this.  Thought you all might be
interested in this

Beth the OT

-----Original Message-----
From: [log in to unmask]
[mailto:[log in to unmask]]
Sent: Friday, February 11, 2000 2:58 PM
Subject: President Clinton: Banning Genetic Discrimination


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.