CARS HOMES JOBS

Here's an idea for Thanksgiving: Talk about medical history when the family is all together

Sunday, November 20, 2011
Text Size: A | A

Bonnie Liebers, a private genetic counselor who operates Genetic Counseling Services, works phone consultation with a client.
Photographer: Marc Schultz
Bonnie Liebers, a private genetic counselor who operates Genetic Counseling Services, works phone consultation with a client.

This Thanksgiving, when you hand over the cranberries and pumpkin pie to Aunt Sally and Grandpa Joe, you might take a minute to think about the DNA around the dining room table.

In 2004, the U.S. surgeon general decided that turkey day should also be National Family History Day, a time not only to pass the mashed potatoes but to share our medical history and gather information on hereditary diseases and conditions.

“Families are so busy and estranged right now, there are only a few opportunities a year to answer these questions,” said Bonnie Liebers, a private genetics counselor who operates Genetic Counseling Services in Niskayuna.

Thanksgiving is an especially good time to chat with the oldest members of our clan, she says.

“Every year that goes by, our families age, family members are lost and that information is lost with them,” she said.

Family Health

-- For information on how to make your own Family Health Portrait, go to https://familyhistory.hhs.gov or www.genome.gov.

The portrait, available free from the U.S. surgeon general’s office, can be saved, updated and shared with doctors and family members. It’s available in English, Spanish, Portuguese and Italian.

-- To learn about genetic testing or find a genetic counselor, visit the National Society of Genetic Counselors, www.nsgc.org; American Board of Medical Geneticists, www.abmg.org; New York state Health Department, www.health.ny.gov or nysgeneticcounselors.org.

“More people still definitely need to know about National Family History Day,” said Charlene Schulz, a genetics counselor at the C.R. Wood Cancer Center at Glens Falls Hospital.

Liebers and Schulz, who are both board certified by the National Society of Genetic Counselors, recommend “My Family Health Portrait” (available at https://familyhistory.hhs.gov), where one can create a medical family tree to give to doctors or send to faraway relatives.

“You can fill out your part of it, and if you don’t know what cousin Linda’s family history looks like, you can send, through an email or a CD your portion of the family history and then she can fill in her portion. You can bounce this around the family,” said Schulz.

“It’s a start, a way to open up a conversation,” said Liebers.

Once you have the information, making a medical family tree online takes less than a hour, she said, and “it has a nice feature of allowing one to save it to one’s computer and continue to update.”

“Statistics show that at least 90 percent of people believe that family history is important to their health, but in fact only about 30 percent ever fill out a family tree,” said Schulz. “Or if they fill out a family tree, it may just show relationships but not health conditions.”

If you decide to be a DNA detective, you’ll need to ask your relatives about cancer, cardiovascular disease, stroke, diabetes, asthma and mental illness. Record the age of diagnosis, whether that person is living or deceased, the age at death and cause of death.

“Try not to skip any of your relatives; go from oldest to youngest,” said Liebers.

Look for the “red flags” that may indicate hereditary disease, said Schulz. “If you have multiple family members with the same disease — cancer or heart disease or diabetes — that’s a red flag. Multiple means three or more family members.”

Age at diagnosis is important.

“If someone has an early onset of a condition — cancer, usually before age 50; heart disease, again before age 50 — then that’s a red flag,” Schulz said.

A male who has had breast cancer? “That’s unusual. That would be considered a red flag,” Schulz said.

And while cancer is common in many families, according to the American Cancer Society, only 5 percent to 10 percent of all cancers are inherited, that is, caused by an abnormal gene that is passed along from generation to generation.

Unchanging rule

“One rule that has not changed is that anyone who has breast cancer under age 50 is a candidate for genetic counseling or genetic testing,” said Liebers.

“For cancers, especially, if there’s a first-degree relative, a parent, a brother or sister or a child with a history, they should get screened 10 years earlier than the average patient,” Schulz said.

Similar test results in several family members can also point to genetic disease.

“For example, if multiple people have high cholesterol. That could be what’s called familial hypercholesterolemia, which can be passed on to children,” Schulz said.

“Those people can have very early onset heart attacks. Knowing in advance can be so helpful because they can get statins or other medications and diet to control their high cholesterol and save a life.”

Blood clotting factors can also be inherited, Schulz said.

“For any family that has problem with clotting issues, that’s something that they should pay attention to.”

Some ethnic groups have a higher risk of certain genetic diseases: Among Ashkenazi Jews, BRCA-1 and BRCA-2 mutations are linked to breast and ovarian cancer; for African-Americans, there’s sickle cell anemia; and for families of Mediterranean descent, thalassemia.

Diabetes is another disease to ask about.

“When we talk about family history, it’s not just about genetics. It’s also helpful to talk about environment and common health behaviors,” said Schulz.

“For example, if we see a lot of diabetes in the family, maybe it’s not due to susceptibility genes, maybe it’s due to diet, or both.”

Genes and environment work together to cause chronic diseases like diabetes, heart disease and cancer, she says.

When you bring your medical family tree to your physician, he or she might recommend screening for a certain disease or refer you to a genetic counselor.

Or one can go directly to such a counselor, who studies and interprets your family tree or “pedigree,” along with your medical records (hospitalizations, prescriptions and pathology reports) and records of your relatives.

“My job is to deal with the whole family, to talk about people I will never meet and study their medical records, to pull the whole picture together,” said Liebers, who was the only genetic counselor in the Capital Region in the early 1980s, before personal computers and the Internet, and worked for years at Albany Medical Center.

“Genetic counseling is a systematic review of your family history,” she said. “Genetic testing really allows us to identify at-risk individuals like never before and offer the opportunity for good health that was denied to some of their relatives.”

Certified counselors

There is no licensure for genetic counselors in New York state, but those who are board-certified, about 2,000 in the United States, have completed a two-year master’s-level program.

“We really know the science, and we have to stay up to date,” said Schulz, who is studying for a doctorate in public health at the University at Albany.

Genetic counseling is covered by Medicare and Medicaid, and in most cases genetic testing is also covered by them.

“In New York, you cannot have a genetic test without a doctor’s script,” said Liebers, who estimates that there are now genetic tests for about 2,400 diseases.

When genetic testing took off in the mid-1990s, it required drawing a sample of the patient’s blood.

“Now tests are becoming simpler and simpler. More and more are cheek swabs to get your DNA,” said Liebers.

“We’re going to have more and more answers about genetic diseases and common diseases. Tests will tell us more so we can take care of ourselves and live longer.”

 
Share story: print print email email facebook facebook reddit reddit

comments

Log-in to post a comment.
 

columnists & blogs


Log into Dailygazette.com

Forgot Password?

Subscribe

Username:
Password: