Genetic Counseling « Birt-Hogg-Dubé Syndrome

Genetic Counseling

What is Genetic Counseling?

When you find out you or a family member has a hereditary syndrome, you’ll have lots of questions. It’s natural to have concerns and worries. If a doctor helped you reach the diagnosis, he or she may be able to answer some of your questions. It’s also an excellent idea to look into genetic counseling. Genetic counseling is a service that is offered by trained individuals, who usually have graduate degrees. Their goal is to offer families an idea about what it means to have a genetic condition, to identify family members who are at risk, and to help them find information or help from other sources if they need it.

Why see a genetic counselor?

Knowing that you have a genetic syndrome in the family means that you have many things to consider along with the medical implications and your reactions to a new situation. You may want to think about telling other family members, and letting them know how they could be tested to see if they also have the gene. If you have children, you will want to think about how having the syndrome could affect them, both emotionally and physically. There are other important issues to consider, such as health insurance and genetic conditions. Some people will recommend you purchase life insurance for everyone in your family, even infants, before you have any of them tested for hereditary conditions. General genetic counselor sessions can be beneficial to both adults and children. Since there is now a gene test for BHD, it is possible that your family will be able to identify family members who have the syndrome at a very young age. A counselor can help you determine how and when to explain BHD to a younger family member. A genetic counselor will not necessarily be a BHD specialist, but will be familiar with the overall issues and may be able to help you find some specialists. The Birt-Hogg-Dubé syndrome is rare and relatively few cases are known throughout the world. Even without specific knowledge about this syndrome, a genetic counselor will still be able to offer a family valuable insight into how they best can approach their own situation and help find answers to questions about BHD.

Finding a Genetic Counselor

Depending on where you live, different professionals may provide genetic counseling. In Europe, you may be referred to social workers or a geneticist. In Australia the UK, and some parts of Asia, you could see genetic counselor, a nurse working in a genetics facility, or a geneticist. In the United State and Canada you will most likely see a doctor (geneticist) or a trained genetic counselor. You may see a nurse with genetic training. Our advice on the importance of seeking genetic counseling is based primarily on experiences in the US and Canada. Availablity of quality counseling services varies throughout the world. Countries are listed below in alphabetical order. We will add new information as it becomes available.

Insurance information – Contact a Family

United States

We recommend asking your local doctor – your primary care physician – if he can find a local counselor for you. In the United States, most services are provided by a doctor who is trained in genetics, or by a trained genetic counselor.If there is a research hospital near you, you may be able to find a doctor who is a geneticist who could help you. You can look in your telephone book to find a counselor, or search online for Regional Genetics Networks.

If you are looking for a genetic counselor and can’t find one locally, the National Society of Genetic Counselors has a link on its website that will help you find one in your area.

Local health care teams may have a genetic counselor on their staff; this is especially true of pediatric teams. Sometimes a prenatal genetic counselor may not be the right person for those who have a syndrome whose symptoms primarily affect adults. However, you can ask if such a counselor has general training that can help you, or can refer you to someone else.

There are many areas in the US that do not have local genetic counseling.

There are genetic counselors who are specialists in cancer genetics; these specialists may only be found in larger institutions or larger cities. Because the kidney cancer that may occur in some BHD families is rare, even a cancer genetic specialist may not be familiar with it. However, a counselor who does not have this specialty can certainly still be very helpful to BHD families.

Telephone or email consultations

You’ll find that most counselors prefer to meet in person.

Paying for a Genetic Counselor

Fees vary for genetic counseling; in 2008, we see fees that range from $100-200 an hour. Most US insurance companies will cover these services. Before you approach your insurance carrier about paying, you may want to consider looking at insurance issues.

Have any outstanding questions you’d like to ask or do you have any advice for anyone new to this issue? Why not post your advice or questions on our forum?