FAQ: The Importance of Genetic Counseling for Hemophilia and Other Bleeding Disorders
What is genetic counseling?
Genetic counseling helps people understand how a genetic test for inherited bleeding disorders may affect themselves, others in their family, or future generations.
A genetic counselor may review family history, explain inheritance patterns, discuss testing options, and help people understand what the results could mean medically and emotionally.
Who may benefit from genetic counseling?
Genetic counseling may be helpful for:
Families with a known bleeding disorder
Women and girls with unexplained bleeding symptoms
Individuals planning pregnancy
Parents considering testing for children
People who want to better understand family risk
How are genetic counseling and genetic testing related?
Genetic counseling is often offered before a genetic test is done. Not everyone chooses testing, and the decision is personal.
“We offer genetic testing for a girl at risk to be a hemophilia carrier as soon as we meet the family, regardless of whether she’s symptomatic, and regardless of her age,” says hematologist and researcher Kristin Maher, M.D., Ph.D., from the Seattle Children’s Cancer and Blood Disorders Center.
During counseling, providers may discuss whether testing could help guide medical care, clarify a diagnosis, identify risks for family members, or support pregnancy and delivery planning.
What can genetic testing tell me?
Genetic testing can help confirm a bleeding disorder diagnosis and may be particularly useful if other blood tests such as factor levels are borderline or in the normal range. Results can assist providers in understanding the risk for heavy menstrual bleeding and guide medical care during pregnancy, childbirth, surgeries, or emergency situations.
Testing also can be informative for other family members. Because many bleeding disorders are inherited, a diagnosis in one person can prompt relatives to recognize symptoms, pursue testing themselves, or prepare for future medical needs.
Does being a “carrier” mean I won’t have bleeding disorder symptoms?
Not necessarily. Experts now recognize that women and girls labeled as “carriers” — a term for someone who carries a genetic condition without experiencing symptoms — may still have bleeding symptoms.
When should genetic testing happen?
Timing for genetic testing varies for each person. It often involves balancing medical benefit, family preferences, and a child’s future autonomy.
“It used to be that the main purpose of carrier genetic testing was delivery planning and family planning with a focus on the potential for a male fetus to have hemophilia,” Maher says. “But now, we know that carriers can have bleeding, and we’re able to offer it earlier, because it could change the management for the girl.”
Maher says that despite this potential benefit, some parents prefer to wait — for example, until the child is old enough to participate in decisions about genetic testing herself.
Are there barriers or other considerations?
Insurance authorization, cost, and limited access to specialists can sometimes delay genetic testing or counseling.
Some families worry that if testing reveals a bleeding disorder, the person could face stigma, guilt, or misunderstandings about the inherited condition, Maher says.
She encourages families to ask questions openly so they can make an informed decision about genetic testing. In many cases, genetic testing results can help them and their relatives better understand their own health risks and care needs.
Source: National Bleeding Disorders Foundation, HemAware, September 2026