Questions about genetic counseling and testing
- Genetic counseling
- Genetic testing
- Preparing for your appointment
- About your appointment
- Medical records
What is genetic counseling?
Genetic counseling is a process of providing information and support about genetics and inherited conditions to an individual or family. The goal of genetic counseling is to provide clear and clinically relevant information about genetic risk factors in a way that both supports and educates.
What are genetic counselors?
Genetic counselors are health professionals with graduate degrees and experience in medical genetics and counseling. Most enter the field with a background in biology, genetics, nursing, psychology, public health or social work.
Why do I need genetic counseling?
You do not have to see a genetic counselor if you do not want to. However, your physician may have recommended genetic counseling because of your personal or family history of cancer. If you are interested in a personalized cancer risk assessment and/or having genetic testing for a particular gene, you should have genetic counseling first to discuss possible test results as well as the benefits, risks and limitations of genetic testing. We will also discuss cost, insurance coverage and concerns about genetic discrimination. The American Society of Clinical Oncology recommends that genetic testing only be done in the setting of pre- and post-test counseling.
What can I expect during my first visit to a genetic counselor?
During your first visit, the genetic counselor will review your family medical history and help you understand the role of genes in causing cancer. The genetic counselor will perform a cancer risk assessment based on the information you provide. You will then discus the chance that a cancer risk is passed through the genes in your family, as well as any genetic testing that could be helpful for you or your family. We will also give you a general estimate of your personal cancer risks. During the risk assessment, we will cover cancer screening and prevention for you and your family. If eligible, you will be given information about research programs at MD Anderson.
I just want genetic testing. Why do I need genetic counseling?
Genetic testing is not recommended for everyone. During your cancer risk assessment, we will help you decide if genetic testing is right for you. Genetic testing usually begins with a family member who has had cancer. Individuals should thoroughly consider whether or not to have genetic testing. During the genetic counseling visit, we will discuss any concerns you may have about genetic testing as well as possible results, benefits, risks and limitations of the testing. We will also discuss cost, insurance coverage and issues of genetic discrimination.
What is genetic testing?
During your cancer risk assessment, the genetic counselor will discuss whether genetic testing is an option for you or your family to consider. Genetic testing involves analyzing a blood sample for specific changes in the DNA, or genetic information. The decision to have genetic testing is a personal choice that can be made during the genetic counseling appointment or at a future date.
Is genetic testing recommended for all patients?
Genetic testing is available for some families with a strong family history of certain types of cancer. During your cancer risk assessment, we will help you decide if genetic testing is right for you or your family. It is best for a family’s genetic testing to start with a family member who has had cancer or a precancerous condition that suggests susceptibility to cancer. The genetic counselor will discuss who in your family is the best candidate for genetic testing.
Will I need to fast before my blood draw for genetic testing?
No. There is no special preparation before you have your blood drawn for genetic testing. Patients typically have one to two tubes of blood drawn for testing. The genetic counselor will explain the process of genetic testing before you have your blood drawn to answer any of your questions and concerns.
How accurate is genetic testing?
Once a genetic test is determined to be appropriate for you or your family, the genetic counselor will cover your test's sensitivity to detecting genetic changes.
How much does genetic testing cost?
The cost ranges from $350-$4,000 or more, based on the specific test ordered. The genetic counselor will determine the specific genetic test that is recommended for you and discuss the cost of testing prior to ordering any genetic testing. Some insurance companies cover the cost of genetic testing.
How long will it take to get my genetic test results?
At the time of your blood draw, the genetic counselor will discuss with you the estimated length of time it will take the lab to analyze your sample. The range is usually from four weeks to three months. We will make an appointment for you to return at the appropriate time to discuss your genetic test results.
What should I do before my appointment?
If you have been referred to MD Anderson for a genetic counseling, it is important you fill out our online genetic risk assessment questionnaire before your appointment. The form is private, secure and provides important information that will help between you and the genetic counselor. Your answers will allow the genetic counselor to accurately evaluate your family history.
You can now complete the questionnaire by logging onto my.mdanderson.org. You will be prompted to enter your username/MRN (Medical Record Number) in the MRN box. Enter your password in Password box. Click the “Login” button. Locate and click the link “Genetic Risk Assessment Questionnaire ” under Notices. Click the NEXT button to start the questionnaire. If the link does not appear or if you experience technical difficulties, please contact Clinical Cancer Genetics at 713-745-7391.
If you do not complete the online questionnaire, you will be asked to complete a paper-based version of the Genetic Risk Assessment Questionnaire in English or Spanish (pdf) prior to your first appointment.
How do I find the information to complete the Genetic Risk Assessment Questionnaire?
Please give yourself time to complete the online questionnaire. You may find it helpful to talk to your family members to find out as much medical information as you can about your family history.
To speed up the process of completing the online questionnaire, it may be helpful to gather information (current age or age at death, and general health history) on your family members. Specifically, we will ask about your immediate family members, including your parents, siblings and children. We also want to know about your extended family members, including your aunts, uncles, cousins and grandparents on each side of your family. It may also be helpful to locate medical records from family members who had cancer. These records include pathology reports of tumors, surgical reports and hospital discharge summaries regarding their cancer course.
For family members who have had cancer, you will need to obtain the following information:
- Type of cancer (e.g., breast, colon, ovarian, etc.)
- Age at which the cancer was diagnosed
- Current age. If deceased, age and cause of death
- For breast cancer cases, whether the cancer was unilateral (e.g., one breast) or bilateral (e.g., both breasts)
- Whether the family member with cancer developed a second cancer. If yes, it is important to try to clarify whether the second cancer was a metastasis (spread from the first cancer), or a new primary cancer (new separate cancer)
Providing the correct information about the types of cancer in your family is very important in assessing cancer risk. We understand you may be unable to collect all the information about your family's cancer history. Genetic counseling will be based on the information that you provide.
Learn more about gathering information for a cancer-focused family history.
What do I need to bring to my first appointment?
Once you have completed the Genetic Risk Assessment questionnaire online, you are ready for your appointment. You can get to this questionnaire through your my.mdanderson.org account. It may also be helpful to bring copies of medical records (including genetic test results, pathology reports, etc.) if you have them. If you do not complete the online questionnaire, you will need to complete and bring the paper version in English or Spanish (pdf) to your first genetic counseling appointment.
Can family members come with me to my first appointment?
You are welcome to invite anyone to come with you (family, friend, etc.) to your appointment, but you will be the main focus of the consultation. If you bring a friend or family member with you and they have specific questions or concerns, it may be necessary to schedule a separate appointment for them.
How long will my first visit be?
The first genetic consultation visit usually lasts 60-90 minutes.
How many times will I need to come to the genetics clinic?
Once a genetic counselor has met with you for your cancer risk assessment, she can discuss with you how often you may need to be seen again. This usually depends on the need for more of your family’s medical history, whether you or a family member decides to have genetic testing, and the complexity of the situation.
Will a physician be present during my genetic counseling visits?
A physician may or may not be present at all genetic counseling visits. However, the genetic counselor will consult with our team of physicians about your medical and family history.
Will I always meet with a genetic counselor during my visits?
Yes, a genetic counselor will always be present to discuss your medical and family history.
How do I get involved in research?
After you complete a cancer risk assessment, your genetic counselor will determine if there are any research programs that are appropriate for you and your family.
I don’t want to have genetic counseling because I don’t want to have genetic testing. Should I cancel my appointment?
Not all patients who have genetic counseling decide to have genetic testing. The genetic counselor is here to give you the information that you need to make an informed decision about genetic testing.
How do I obtain a family member’s medical records?
To obtain a family member’s medical records, your family member will need to bring a form authorizing release of their medical information to you or your health care provider. Your family member will need to indicate which information from their medical record they would like to release to you, such as pathology reports, surgical reports, genetic consultation notes, and genetic test results. If that family member is deceased, the closest living relative must sign the release form.
How do I get a copy of my genetic consultation notes?
Records are available from the Release of Information Office. You must provide a signed Authorization for Disclosure of Information form. Your patient service coordinator or genetic counselor can provide you with this form. You must specify on the form that you would like to release your genetic consultation notes.
Release of Information office:
How do I obtain a copy of my pedigree?
A pedigree is the drawn family tree that you and the genetic counselor developed during your first genetics consultation. Pedigrees are available from the Clinical Cancer Genetics Program. Please contact your genetic counselor to obtain a copy.
Will the information discussed during the genetic counseling appointment(s) be part of my medical records?
Yes. This information is made available to your health care providers so they can make appropriate medical management recommendations and decisions. You will also be mailed a copy of the genetic consultation notes for your personal files.
Will my genetic test results be part of my medical records?
Yes. The results of any genetic testing will be recorded in your medical records. This information is made available to your health care providers so that they can make appropriate medical management recommendations and decisions.
Will my insurance cover my genetics visit?
Our services are covered by many insurance plans. When you make your appointment, you will be assigned to a care center that best matches your cancer risk. In order to verify if your insurance company will cover your visit, please contact your care center’s business office.
How is genetic counseling going to affect my insurance?
There is no evidence that having a cancer risk assessment will impact your insurance. During your first visit, the genetic counselor will provide you with information about genetic discrimination.
How is genetic testing going to affect my insurance?
There is current state and federal legislation that provides protection from genetic discrimination to individuals enrolled in group health insurance plans. The genetic counselor will provide you with information about genetic discrimination before you have genetic testing.
How do I get a letter of medical necessity so that my insurance can cover the genetic counseling visit?
If your insurance requires it, please ask your referring physician to provide your insurance provider with a letter of medical necessity.
How do I get a letter of medical necessity so that my insurance can cover genetic testing?
If you choose to undergo genetic testing, the genetic counselor will discuss insurance coverage and letter of medical necessity. The genetic counselor will not be able to write a letter until after you have received a cancer risk assessment.
Genetic Counseling Resources
Genetic Counseling Appointment
Existing MD Anderson patients: Request a genetic counseling referral from your attending provider.
Clinical Cancer Genetics
The Clinical Cancer Genetics Program coordinates genetic testing and high-risk cancer surveillance for individuals and their families with hereditary cancer syndromes.