The patient had been diagnosed with a genetic disorder many years ago in his home country, but he’d never been told anything about it. “When I saw him, I was able to explain the condition – familial adenomatous polyposis – to him and to explain that it was causing him to be at high risk for colon cancer,” says Annelise Pace, a second-year student in the genetic counseling master’s degree program at The University of Texas MD Anderson Cancer Center UTHealth Graduate School of Biomedical Sciences.
“I was also able to explain what that condition meant for his children and to help him figure out when it would be appropriate to order genetic testing for the children,” says Pace, who conducts genitourinary cancer research at MD Anderson. “He was so grateful to finally have this condition explained, because he’s been confused about it for so many years.”
Helping people understand complex medical information in a way that helps them make decisions is the goal of genetic counseling.
“An essential component of a genetic counseling session is taking a thorough family history and doing a risk assessment for conditions in this family that might have a hereditary component,” says Claire Singletary, director of the Graduate School’s genetic counseling program. “We look at whether there are genetic tests for the likely hereditary conditions. We help the family work through whether the tests would provide them with useful information.”
According to the National Institutes of Health, more than 2,000 genetic tests are available. A genetic test can confirm or rule out a suspected genetic disorder, such as Duchenne muscular dystrophy, or can help determine a person’s risk of developing or passing on a disease, such as cancer. Inherited genetic mutations play a major role in about 5 to 10% of all cancers. Researchers have associated mutations in specific genes with more than 50 hereditary cancer syndromes, which predispose individuals to developing certain cancers.
Test results may help in planning for the expected course of a disease or in choosing among treatment options. Faced with the same test results, different circumstances may lead patients to make different decisions.
For example, Pace’s faculty research advisor, Ashley Woodson, tells of counseling members of a family in which several young women with breast cancer tested positive for a hereditary form of the disease.
“These were women in their 20s and 30s, and some were not married or thinking about future children at that point, while others had finished having their families,” says Woodson, a 2011 graduate of the program. “Testing positive for a hereditary form of breast cancer certainly forces young women to make decisions about future family planning before they typically would have. These genes can increase the risk of another breast cancer or ovarian cancer and so they have to talk through all of that.”
Depending on their specific circumstances, some of the women might decide to have preventive mastectomies, while others might decide to be screened more frequently.
Knowledge and skills
Helping patients sort through questions surrounding genetic testing requires both scientific knowledge and psychosocial skills. Successful program applicants average above a 3.5 GPA and GRE graduate school entry exam scores around the 70th percentile or better. Prospective students are encouraged to shadow a genetic counselor and to do advocacy work for people with disabilities, staff a crisis hotline, or participate in other programs that give them experience working with individuals going through a difficult time.
One of about 40 accredited two-year master’s degree programs in the United States and Canada, the school’s program receives more than 150 applications annually. About 40 applicants are selected for interviews. From those, eight to 10 students are admitted. Each receives a scholarship to partially offset the cost of tuition.
“We’ve received tremendous support from UTHealth and MD Anderson, and we’ve been fortunate to continue to grow our class size,” Singletary says. “Nationally, there are more genetic counseling jobs than there are genetic counselors graduating on an annual basis. The field is trying very hard to meet that demand.”
When the program was founded in 1989, there were three genetic counselors in Houston. Now there are nearly 100, thanks to this program. While 30-45% of admitted students are Texans, about 70% stay in Texas to practice after graduation.
The program is rigorous, but faculty and student mentors help with the transition to a new city, to graduate school life and later to preparing to defend a research thesis and navigating the world of jobs.
All students are trained in pediatric medical genetics, prenatal and cancer genetic counseling. The accreditation agency for genetic counselors requires students to have participated in at least 50 counseling sessions. Students in the program average 150 to 200 sessions.
“The Texas Medical Center is unmatched on the depth and breadth of cases that we see here,” says Singletary, who specializes in prenatal counseling. “And Houston being the most diverse big city in the country, is a fantastic place to intersect with people from all different parts of the world and all different walks of life and cultural backgrounds.
“Genetics is expanding into all areas of medical care, such as cardiology and neurology,” Singletary says. “One day personalized genetic medicine is probably going to be a part of how all our health is taken care of.”