About Hemophilia Hemophilia & Genetics
Counseling
People with hemophilia may feel they need help understanding genetics and the impact a genetic disorder like hemophilia can have on life. That's where genetic counselors can be so valuable. Many couples concerned about hemophilia get counseling prior to starting a family.
Genetic counselors are health 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 Is A Genetic Counselor?1
The National Society of Genetic Counselors has adopted the following definition:
"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:
- 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."
What Qualifications Should A Genetic Counselor Have?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?3
Many individuals can benefit from genetic counseling. For example:
- If you have a family history of hemophilia, counseling can help you determine whether you are a carrier and assess the probability of having children with hemophilia.
- If you've already had a child with hemophilia, genetic counseling can help you learn more about the disorder and determine your risk of having children with hemophilia in the future.
Others may elect to meet with a genetic counselor, including people with family histories of any birth or genetic defect, women over age 35 planning pregnancies, or women who have had several miscarriages of unknown cause, among others.2
What Happens During A Session With A Genetic Counselor?
Genetic counselors are prepared to speak about complex scientific and emotional topics concerning hemophilia 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 hemophilia, or is a carrier.2
In a typical session, a genetic counselor may:3
- Request and interpret individual, family, medical, developmental, and reproductive histories.
- Determine the probability of transmitting hemophilia or other genetic conditions.
- Discuss the inheritance, diagnosis and features of hemophilia.
- Identify, coordinate, interpret, and explain genetic laboratory tests and other diagnostic studies.
- Provide guidance on relevant social, educational, religious, or cultural issues regarding hemophilia.
- Help make informed decisions about testing, management, and reproductive alternatives.
- Identify community resources or support groups that may be of assistance.
Find More Help And Resources Here
- Learn how to do the 5!
- View the emergency room checklist.
- More information about sports & exercise.
- Want to connect to the hemophilia community?
- Proactively manage your health insurance.
What Information Should Be Provided To A Genetic Counselor?
If you are concerned about hemophilia, you'll need to know your family's history of hemophilia. 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 hemophilia in you or your family.
Will A Genetic Counselor Attempt To Influence Decisions Or Direction?2
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 hemophilia that are right for them.
Do Genetic Counselors Perform Gene Therapy?2
No. Genetic counselors educate families or individuals about the likelihood of passing on a genetic disorder such as hemophilia. 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.
Note: ThereForYou.com does not recommend a particular treatment for specific individuals and recommends that you consult your hemophilia treatment center or physician before pursuing any course of treatment.
Note: Links to external websites are provided for your convenience. However, they lead to websites not created, managed, or maintained by Baxter Healthcare Corporation. Baxter is not responsible for, and does not necessarily endorse, the opinions or therapeutics represented on these external pages.
References
- Genetic Counseling as a Profession. The National Society of Genetic Counselors website. http://www.nsgc.org/About/FAQsDefinitions/tabid/97/Default.aspx. Accessed June 8, 2011.
- FAQ about Genetic Counselors and the NSGC. The National Society of Genetic Counselors website. http://www.nsgc.org/About/FAQsaboutGeneticCounselorsandtheNSGC/tabid/143/Default.aspx. Accessed June 8, 2011.
- Miller, R. Genetic Counselling For Hemophilia. Treatment of Hemophilia No. 25 Monograph. Montreal, Canada: World Federation of Hemophilia; May 2002. http://www.wfh.org/2/docs/Publications/Genetic_counsel/TOH-25_English_genetic_counselling.pdf. Accessed June 8, 2011.
