WHAT EVERY WOMAN SHOULD KNOW ABOUT
GENETIC DISCRIMINATION
Genetic testing in its simplest form takes place in doctors’ offices, clinics and hospitals
everyday. Talking to a health care provider about your family history can reveal genetic
information and predisposition to disease -- information that becomes part of your
permanent medical record. More sophisticated genetic tests help potential parents test
for birth defects and hereditary diseases, like cystic fibrosis.
In the very near future, scientists will have deciphered the entire genetic code, providing
human beings with more information about our health than ever before. Genetic tests
will be used widely to tell us the likelihood of developing a disease, and how we can
control or avoid disease development by altering our behavior. Genetic testing will
dramatically improve how we care for ourselves and our families by providing
information on how we can prevent future health problems, and cope more effectively
with unavoidable conditions.
But the ability to predict disease through genetic testing and family history opens
troubling questions about discrimination particularly by employers and insurance
companies. There is limited federal protection in place to prevent an employer from
denying a job or a promotion based on genetic information. The law provides only
narrow protection from genetic discrimination by insurance companies, as well.
The promise of genetic testing is unlimited and should not be diminished by the fear of
genetic discrimination. This guide will give you a basic understanding of this emerging
problem, and explain why federal protection from genetic discrimination is needed.
What is genetic discrimination?
Genetic discrimination occurs when insurance companies or employers make decisions
based on genetic information. For example, if an insurance company refuses to cover
someone, or an employer refuses to hire or promote, or fires an employee because of
genetic information, that’s genetic discrimination.
As genetic testing becomes less expensive and more widespread, reports of
discrimination are growing and employers are increasingly seeking information about
C
A woman found to carry the gene for cystic fibrosis was told that neither she nor
any children that she might have would be covered by health insurance unless it
was determined that her husband did not carry the cystic fibrosis gene. 2
C
Two employees at a telecommunications company in Boston say they were fired
after refusing to provide hair samples for company-mandated testing. The
employees feared their employer was looking for genetic information. 3
I haven’t had a genetic test, so I’m safe from genetic discrimination,
right?
Not necessarily, because genetic information is not limited to test results. It includes any
information about genes or characteristics inherited from family members, including
your family’s history of particular diseases like Parkinson’s or diabetes. In some cases,
requesting or receiving genetic counseling can be treated as an indication of having a
genetic condition. All of these elements are genetic information that can become part of
your permanent medical record.
How could my genetic information affect my health insurance?
Consider this hypothetical case. Theresa is a 46-year-old woman whose mother and
sister both died in their mid-40s from breast cancer. Theresa has heard of a National
Institutes of Health (NIH) research study on breast cancer prevention. By participating
in this study, she will be tested to learn whether she has inherited a gene that
predisposes her to breast cancer, and she will be closely monitored for any signs of the
disease.
Theresa would like to participate, but she knows there are risks. If her test shows a
predisposition to breast cancer, that information may be used against her in the future.
Even if an insurance company does not know the results of the test, it may find out that
she underwent testing and assume that merely asking for the test indicates a greater
risk of the disease. Because of this assumption, the insurance company may ultimately
deny her coverage or charge her more for premiums. Theresa is also worried about
jeopardizing her children’s health insurance since her genetic makeup influences her
children’s as well.
How could my genetic information affect my job?
Many people fear that their genetic information will be used against them in hiring or
Self-insured employers -- the millions of American businesses who act as their own
insurance company and approve or deny claims -- often have easy access to employee
medical records. Controlling the use of this information can be difficult and, as a result,
genetic information might be misused by employers in making hiring, firing, and
promotion decisions.
Some employers actually collect genetic information, a practice under challenge in court
cases around the country. A recent survey of employers revealed that almost onequarter of employers take family medical histories of employees and applicants,
information that could be used to spot a pattern of illness with genetic implications. In
addition, some employers test new hires and employees for susceptibility to workplace
chemicals.4
Don’t I have to give consent before my employer can get medical
information about me?
Under some circumstances, no. Under current federal law (the Americans With
Disabilities Act, or “ADA”), once an employer offers you a job, the employer can require
you to undergo a very comprehensive medical examination. But the employer cannot
take away the job offer unless the exam shows that the employee has a disability that
means he or she cannot do the job and there is no reasonable way for the employer to
accommodate the employee’s disability. The employer also can require periodic medical
exams once you are employed, if the exams are job-related and necessary for the
business. The information that the employer collects from these exams must be kept in
confidential medical files.
In addition, employers may do some monitoring of workplace health as part of
workplace safety monitoring under the Occupational Safety and Health Act, or OSHA.
Isn’t all the information in my medical record confidential?
Not exactly. In theory, medical records are confidential documents available only to you
and your health care provider. In practice, though, there are many opportunities for your
privacy to be violated: when your doctor’s office submits your insurance claim through a
claims processing system, when a health care plan sells your information to a drug
company for marketing purposes, when your employer processes health benefits claims
through its human resources department, when your managed care company does a
routine review of medical records, and, of course, when your employer is collecting
genetic information (see above). In all these circumstances, your medical information
information can be used.
What protection do I have against genetic discrimination?
Although no federal law comprehensively bans genetic discrimination, the National
Partnership for Women & Families pushed Congress to include protection against
genetic discrimination from health insurance companies in the Health Insurance
Portability and Accountability Act (HIPAA)**, passed in 1996.
Protections in HIPAA: Before HIPAA became law, too many people had
experiences like one teacher in Kansas whose insurance company wouldn’t
cover
her son’s spina bifida because it was discovered through a prenatal
test. The
insurance company refused coverage on the grounds that the baby’s
condition
was genetic or “preexisting” -- even though the condition would have
been
covered if it had not been discovered until delivery. 5
The HIPAA law provides some limited but important protections: If you are in a
group health plan covered by HIPAA and test positive for a gene that may
predispose you to a disease, you cannot be denied insurance or treated as if you
have a “preexisting condition” solely because of your genetic profile. In addition,
an insurance company cannot deny coverage of a newborn’s or newly adopted
child’s medical problem as long as the child is signed up for health insurance
within 30 days of birth or adoption and the benefits for the medical problem are
otherwise available under the plan.
HIPAA has the potential to protect millions of people who have group health
insurance from genetic discrimination by health insurers, but the law does not
fully address the problem. For instance, HIPAA does not apply to all people who
buy insurance in the individual market. It also does not prevent plans from
charging more to all members of a group plan -- such as an entire office -because of the genetic makeup of specific members of the group.
So, going back to our example, if Theresa loses her job or quits, and lets her
insurance policy lapse because she cannot afford to continue her coverage, she
may later find it impossible to get or afford health insurance in the individual
market, despite the fact that she may go through life without ever getting breast
cancer.
In addition to HIPAA, there also are protections against employment discrimination
employers that the Americans With Disabilities Act (ADA) protects employees
from genetic discrimination.6 However, the guidelines issued by the EEOC have
not yet been finally reviewed, and in general, proving employer bias remains
difficult.
Protections in State Laws: There are some protections in state laws, but they
vary greatly, and many do not go far enough. At this writing, 35 states have laws
prohibiting genetic discrimination in health insurance, and 23 states have laws
prohibiting such misuse in employment decisions. The issue is gaining ground: at
least 150 bills dealing with genetic discrimination are pending before state
legislatures.
To find out if there are laws in your state against genetic discrimination by health
insurers -- or to file a complaint -- call the state insurance commissioner's office.
To find out if there are laws against genetic discrimination in the workplace -- or
to file a complaint -- try your state's office of civil rights or labor department.
What is being done to protect me from genetic discrimination?
The National Partnership for Women & Families is working to pass pending federal
legislation that will ban discrimination by both health insurers and employers, and allow
individuals to seek redress for discrimination in state and federal courts. Federal
legislation is needed to set high standards that adequately protect women and families
from genetic discrimination. Federal protections must cover the full range of “genetic
information,” including family history, and must apply to everyone, regardless of whether
they get their insurance through their employer, on their own in the individual market, or
through a public program like Medicare or Medicaid. It should also establish severe
penalties for employers and insurers who misuse genetic information. The National
Partnership is leading a grassroots effort to move these protections through Congress
and secure better protections for millions of individuals and their families. If you would
like to join this effort, please contact Susannah Baruch at 202-986-2600 or e-mail her at
[email protected].
Genetic research will improve our health and our well-being exponentially if we act now
to keep genetic discrimination from overshadowing these advances. With the varying
nature of state laws and the absence of comprehensive federal protections, you should
weigh carefully the potential benefits and repercussions of genetic testing. More states
will be looking at the issue, along with federal lawmakers in Washington, DC.
ENDNOTES
1. “Genetic discrimination and health insurance: A Case study on breast cancer.” Bethesda,
Maryland, 11 July 1995, workshop sponsored by the NAPBC and the NIH-DOE Working Group
on the ELSI of Human Genome Research.
2. Bereano, Phil and Richard Sclove, “Life, Liberty, and the Pursuit of Genetic Testing”
Washington Post March 22, 1998.
3. Armour, Stephanie. “Could Your Genes Hold You Back?” USA Today May 5, 1999.
4. 1999 American Management Association Survey on Workplace Testing: Medical Testing.
Summary of Key Findings, New York, New York.
5. Armour, Stephanie. “Could Your Genes Hold You Back?” USA Today May 5, 1999.
6. March 15 1995 EEOC Guidance on “disability,” section 902.
**The Guide to the Health Insurance Portability and Accountability Act: What the Health Insurance Reform
Law Means for Women & Families is available on the National Partnership’s web site,
www.nationalpartnership.org, or by sending a self addressed, stamped envelope to: National Partnership
for Women & Families, 1875 Connecticut Avenue NW, Suite 710, Washington, DC 20009.
©2000, National Partnership for Women & Families