Genetics Frequently Asked Questions

What is genetic counseling?

Genetic counseling is the process of helping people understand and adapt to the medical, psychological and familial implications of genetic contributions to disease.
This process integrates:

• Collection and interpretation of family and medical histories to assess the chance of disease occurrence or recurrence
• Education about inheritance, testing, management, prevention, resources and research
• Counseling to promote informed choices and adaptation to the risk or condition
  Visit http://www.nsgc.org/ for more information about genetic counseling.

What to expect from my visit?

At the time of scheduling the appointment for the first visit, a second consult appointment will be schedule to review the test results.  During the patient's initial visit to the clinic, a genetic counselor will include a review of the personal and family medical history, a discussion of the role genes play in the development of cancer, and basic genetic concepts.  A personalized risk assessment for hereditary cancer, a description of the genetic testing process, as well as information about cancer risk reduction and prevention strategies are discussed in detail. The family history is carefully assessed and the risk of carrying a mutation is determined and fully discussed.

Most health insurance plans pay for these tests, but not all do.  We will help with the preauthorization process and determine the level of insurance coverage for testing.  If you have an HMO insurance, it is your responsibility to obtain a referral for genetic testing prior to our ability to check with your insurance (Two office visits are needed with one of our physicians: Dana Zakalik, M.D. or Richard Zekman, D.O.).  

An appointment with the Cancer Genetics Program consists of a consult with both a genetic counselor and physician, and possibly a blood draw, if testing is pursued.  There is no need to fast prior to the blood draw.  The initial consult lasts around an hour to an hour and a half, depending on the questions that arise.   Most, but not all, insurances cover the cost of this office visit.

Test results are available in two to five weeks (depending on the test(s) ordered). Results will be discussed in details at the follow up appointment (we give test results in person, and not over the telephone). We then have a thorough discussion about future management recommendations and risk reduction strategies, as well as family dynamics.

What is the cost of testing?

The genetic tests range in cost depending on the specific gene(s) being tested, and if there is a known familial mutation.  The costs can be anywhere from $170 to $3340 (or more depending on the test ordered).  Most insurances do pay for testing, but coverage is dependent on each individual's policy.

What about genetic discrimination?

The Health Insurance Portability and Accountability Act (HIPAA), which was enacted in 1996 states explicitly that genetic information should not be considered a pre-existing condition.  Individuals with a genetic mutation cannot be denied health insurance.  An individual changing from one group health plan to another cannot be refused coverage.  On May 21, 2008, the President signed GINA (Genetic Information Nondiscrimination Act) into law.  This law prohibits employers and insurance companies, both private and public, from discriminating against an individual because of their genetic status.  Therefore, an individual with any type of health insurance cannot be genetically discriminated against (cannot lose health insurance, nor be dropped from a policy, nor be denied health insurance if switched insurances). The health insurance provisions will take effect in twelve months, and the employment portion will take effect in eighteen months.  This law still does not cover life insurance or disability.  For more information, please visit http://www.geneticfairness.org/. To date, there are no well-documented cases of discrimination based on genetic information by a health insurance carrier.

There are further State laws within Michigan that protect an individual against employment discrimination.  This is the Act 32 of 2000.  There is also a Governor's Commission on Genetic Privacy and Progress Report created in 1997.  Consequently, there are further protection policies against genetic discrimination within the State of Michigan.  If you are interested in looking at these policies in more detail, please visit their website:  www.migeneticsconnection.org/policy.shtml.

Does genetic testing really make a difference if I already know I have a family history of cancer?

Yes. Genetic testing for inherited cancers helps you and your doctor understand your true risk so you can make the best choices for preventive medical care.

Who is the most appropriate person to first have cancer genetic testing in my family?

The individual diagnosed with cancer is the most appropriate person to be tested first.  However, if this person is unavailable for testing, an unaffected family member can also be tested.

Are genetic tests covered by insurance?

Most health insurance plans pay for these tests, but not all do, and is dependent on your specific policy. 90% of our patients have at least 80% coverage for genetic tests.  We can assist in the preauthorization process and most laboratories will determine the level of insurance coverage for testing prior to any testing beginning.

Is genetic discrimination prohibited by law?

Yes. Federal laws prohibit discrimination based on genetic information.  Most states have additional laws that prohibit such discrimination (including Michigan).

Who can gain access to my genetic test results?

Genetic test results are strictly confidential.  Even when insurance plans pay for testing, the insurer does not receive the results.  Under no circumstances will patient results be given to any party without the written consent of the patient.

What types of cancers are associated with inherited gene mutations?

Only about 10% of all cancers are hereditary.  Many different cancers can be related to an inherited gene mutation.  The most common are:

• Breast
• Ovarian
• Colon
• Endometrial (uterine)
• Prostate
• Stomach
• Kidney
• Pancreatic
• Melanoma
• Other rare cancers

What important information can be attained from genetic counseling and screening?

Determining a person's risk of developing certain cancers.  This allows implementation of risk-reducing interventions:  better screening, surgical prevention, and chemoprevention.  This information can be helpful for both an individual as well as their family members in preventing cancer from developing.

What else should I know about individual and family genetics?

Genes can be passed down through a woman or a man equally. A father can pass on a gene to his daughter or son; paternal lineage transmission of a gene mutation.

What is involved with genetic testing?

Genetic counseling, education, and consent is obtained. Blood is drawn with informed consent and the sample is sent to a lab.  DNA extraction and analysis.  Results appointment to discuss genetic testing results and implications for medical management.

How soon are results available?

Anywhere from 2 to 6 weeks, depending on the specific test ordered.

To learn more about genetic counselors, check out What to Expect with Genetic Counseling and Testing.