Genetic Counseling for Bleeding Disorders
People with a bleeding disorder may feel they need help understanding genetics and the impact a genetic disorder like hemophilia or von Willebrand disease can have on life. That's where genetic counselors can be so valuable. Many couples concerned about a bleeding disorder get counseling prior to starting a family.
Genetic counselors are healthcare professionals trained to help people understand genetic disorders and provide information and support to those who need it. Genetic counselors may also serve as patient advocates and refer individuals or families to local services.
What Qualifications Should A Genetic Counselor Have?1,2
Genetic counselors have a minimum of a master's degree in genetic counseling or a related field. A genetic counseling degree includes extensive training in both human genetics as well as psychology. Many genetic counselors are board-certified by the American Board of Genetic Counseling.
Who Should See A Genetic Counselor?2
Many individuals can benefit from genetic counseling. For example:
- If you have a family history of hemophilia or von Willebrand Disease (vWD), genetic counseling can help you assess the probability of having children with a bleeding disorder.
- If you've already had a child with a bleeding disorder, genetic counseling can help you learn more about the disorder and determine your risk of having children with a bleeding disorder in the future.
Others may elect to meet with a genetic counselor, including people with family histories of any birth or genetic defect, women planning pregnancies, or have had genetic testing and received abnormal test results, among others.3
What Happens During A Session With A Genetic Counselor?
Genetic counselors are prepared to speak about complex scientific and emotional topics concerning bleeding disorders and present or future children. They often act as interpreters of technical medical information. They also are skilled at providing support in emotionally stressful situations, such as learning that you, your partner, your relative, or your child has a bleeding disorder, or is a carrier.2
In a typical session, a genetic counselor may:
- Request and interpret individual, family, medical, developmental, and reproductive histories.
- Determine the probability of transmitting a bleeding disorder or other genetic conditions.
- Discuss the inheritance, diagnosis and features of bleeding disorders.
- Identify, coordinate, interpret, and explain genetic laboratory tests and other diagnostic studies.
- Provide guidance on relevant social, educational, religious, or cultural issues regarding bleeding disorders.
- Help make informed decisions about testing, management, and reproductive alternatives.
- Identify community resources or support groups that may be of assistance.
What Information Should Be Provided To A Genetic Counselor?
If you are concerned about a bleeding disorder, you'll need to know your family's history of bleeding disorders. Often, the genetic counselor will provide a family history form for you to complete prior to your visit. You'll also need to bring (or have sent) any relevant medical records documenting the occurrence of a bleeding disorder in you or your family.
Will A Genetic Counselor Attempt To Influence Decisions Or Direction?3,4
No. According to the National Society of Genetic Counselors, a genetic counselor's primary concern is helping people reach decisions appropriate for them and their family, or helping them adjust to complex information, uncertainties, or new diagnoses.
The counselor is there to offer support and guidance and won't make decisions or suggest courses of action. The goal is to provide all of the information so people can make informed decisions about bleeding disorders that are right for them.
Do Genetic Counselors Perform Gene Therapy?3
No. Genetic counselors educate families or individuals about the likelihood of passing on a genetic disorder such as hemophilia or von Willebrand disease. Gene therapy is the highly technical science of altering genes to treat diseases.
Genetic counselors may discuss gene therapy in specific disorders, but they are not the professionals who conduct research or carry out the process. Genetic counseling and gene therapy are totally different.
How Can I Find A Genetic Counselor?
Physicians or treatment centers can provide referrals to genetic counselors. Or, search online for genetic counselors by visiting the National Society of Genetic Counselors website.
- Genetic Counseling Jobs: Salaries, Duties and Requirements. Study.com. http://study.com/articles/Genetic_Counseling_Jobs_Salaries_Duties_and_Requirements.html. Accessed January 26, 2017.
- Genetic Counseling for Hemophilia. World Federation of Hemophilia. http://www1.wfh.org/publications/files/pdf-1160.pdf. Accessed January 26, 2017.
- What Do Genetic Counselors Do? National Society of Genetic Counselors. http://aboutgeneticcounselors.com/About-Genetic-Counselors/What-Do-Genetic-Counselors-Do. Accessed January 26, 2017.
- NSGC Code of Ethics. National Society of Genetic Counselors. http://www.nsgc.org/p/cm/ld/fid=12. Accessed January 26, 2017.