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 Medical tests can look for many inherited gene
mutations. This type of testing is called predictive genetic
testing. Most people do not need this type of genetic testing. It’s
usually recommended when certain types of cancer run in a family and
a gene mutation is suspected.
You might consider this type of testing if:
• You have several first-degree relatives (mother, father, sisters,
brothers, children) with cancer.
• Many relatives on one side of your family have had the same type
of cancer.
• A cluster of cancers in your family have been linked to a single
gene mutation (such as some types of breast, ovarian, colorectal,
and pancreatic cancers).
• A family member has more than 1 type of cancer.
• Family members have had cancer at a younger age than normal for
that type of cancer.
• Close relatives have cancers that are linked to hereditary cancer
syndromes.
• A family member has a rare cancer, such as breast cancer in a man
or retinoblastoma (a type of eye cancer).
• Ethnicity (for example, Ashkenazi Jewish ancestry is linked to
ovarian and breast cancers).
• A physical finding is linked to an inherited cancer (such as
having many colon polyps).
• One or more family members have already had genetic testing that
found a mutation.
Getting started
If cancer runs in your family and you have a reason to think you
might benefit from testing, talk with your health care provider and
plan to meet with a genetic counselor. Genetic counselors have
special training and often graduate degrees in their field. Some
doctors, advanced practice oncology nurses, social workers, and
psychologists with special training may also do genetic counseling.
Your health care provider can probably refer you to a genetic
counselor in your area. If not, you can find a list of certified
genetic counselors on the websites of the National Society of
Genetic Counselors or the National Cancer Institute.
A genetic counselor can help you figure out whether testing is right
for you and your family. And if you decide to get tested, a genetic
counselor can help you interpret the results. Genetic testing
results often give limited answers about having increased risk for
certain cancers. They can’t tell you whether you will or will not
get cancer. This is one reason why counseling is so important.
Some genetic test manufacturers advertise and promote their tests to
doctors and to the public. Sometimes they can make the test sound
much more helpful and decisive than it’s actually proven to be. This
can be harmful because decisions about testing may be made based on
incomplete information, or even on misleading or wrong information.
A genetic counselor can steer you to a reputable lab and help you
know what to expect from your test results.
More to consider
Other family members: Genetic testing results affect not just you;
they also affect family members who share your genes. Not everyone
might want to know if they are at increased risk. Learning that you
or a family member might have an increased cancer risk can be
upsetting. The possibility of having a certain genetic mutation or
passing on the faulty gene to children can also lead to feelings of
guilt or anger.
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Tests can lead to more tests: In some cases, more
medical tests, cancer screenings, or procedures may have to be done
as a result of genetic testing. This can be a good thing, if these
other tests help keep you free of cancer or if they find it early,
when it’s likely to be smaller and might be easier to treat. But the
tests can have downsides as well, such as the time and expense
involved, as well as possible risks from the tests themselves. These
extra tests can also lead to more stress and anxiety.
Cost: Genetic testing can be expensive. Some tests cost more than
others, and the final bill can be thousands of dollars. Be sure you
have an idea of how much it will cost you before you have testing
done.
Insurance questions: If you have health insurance, you’ll need to
decide if you’re going to ask your insurance company to help pay for
testing. For the most part, state and federal laws do not require
insurance companies to pay for predictive testing, so not all of
them cover or help pay for the tests.
Federal health care laws say that genetic testing should be covered
for some women found to be at higher risk for breast and/or ovarian
cancer. The amount of coverage depends on your health plan, so you
have to contact them to find out what’s covered.
Privacy: Some Americans fear that employers and insurance companies
might find out about a genetic mutation and use it against them.
Discrimination and employment decisions based on genetic information
are barred at the national level for most employers. Even so, some
people choose to pay for genetic testing themselves in order to keep
the results as private as possible.
Employers should not request genetic testing for inherited genetic
mutations. They are only allowed to ask for a worker to have genetic
testing if there is a possibility of exposure to potentially toxic
chemicals and substances in the workplace, which may lead to a
different kind of gene mutation.
The Genetic Information Nondiscrimination Act of 2008 is a federal
law that prohibits the use of genetic information in workplace
employment decisions for non-governmental organizations with more
than 15 employees. This law also bars health insurers from making
coverage or cost decisions based on genetic information. But the law
does not restrict use of genetic information for life insurance,
disability insurance, or long-term care insurance.
Some medical and pharmaceutical researchers may be interested in
having genetic information and samples to help them try to develop
new medications to treat some diseases. These researchers must get a
person’s informed consent and explain what will be done before
obtaining genetic tissue samples.
Caution: Home DNA Testing
Experts advise caution before buying an online service that tests
your DNA and mails you back results regarding certain genetic health
risks or inherited conditions. Scientific experts say it may be best
to use these services purely for entertainment value.
The US Food and Drug Administration cautions that direct-to-consumer
tests may provide incorrect or misleading information, and advises
talking to a medical professional before using the results to make
any health choices.
[The American Cancer Society medical
and editorial content team] |
