The UNMC Munroe-Meyer Institute has joined three other states to form a consortium sharing $1.3 million to establish accredited master’s degree programs in genetic counseling. Funding for the consortium was made possible by an appropriation in the 2004 Omnibus Appropriation Bill approved by the U.S. Congress and signed Jan. 23, by President George W. Bush.
The consortium, called Mid-America Genetic Counseling Distance Education Consortium, was formed to establish a degree program and retain and recruit genetic counselors. Organizers say having degree programs in the states will enhance public health and economic benefits of each state by increasing the likelihood that graduates will stay in the state following graduation.
Members of the consortium
The University of Arkansas for Medical Sciences in Little Rock, Ark., is leading the effort. Besides UNMC, the University of Kansas Medical Center and University of Oklahoma Health Sciences Center also are members of the consortium. Of the 23 currently accredited programs in genetic counseling in the United States, 18 are in border or coastal states. The others are in Pennsylvania, Illinois, Indiana and Colorado.
“This is an excellent example of states collaborating through their members of Congress to address critically needed services for their constituents. We are grateful for what our representatives have done on our behalf,” said Bruce Buehler M.D., director of the Munroe-Meyer Institute for Genetics and Rehabilitation at UNMC. “For families faced with cancer, birth defects or hereditary disease, information is critical and that is the role of a genetic counselor. UNMC is proud to be a part of this effort.”
What is a genetic counselor?
Genetic counselors specialize in medical genetics and counseling for expectant couples, and children with birth defects or genetic disorders and their families, providing the education, support and resources they need to live productive lives. Counselors also assess risk of genetic abnormalities, interpret genetic information and analyze inheritance patterns and risks of recurrence.
Experts say the increased demand for genetic counselors, as well as the need to educate other health-care providers, is a result of advances in technology and information about human genetics.
Creating a master’s degree program
In 2004, UNMC will receive $276,000, which will be used to collaborate with other institutions to establish the two-year master’s degree program. In Nebraska, about two to three students could be accepted into the program each year, beginning in January 2005.
Following a two-week orientation in Little Rock, Ark., students will spend the first year doing coursework on their home computers through Internet technology. Course content will include science-based classes such as genetics, pre-natal health and diagnosis and health disorders, as well as psychosocial and counseling issues. The second year will be spent doing clinical and laboratory work.
Training and retaining
UNMC typically gets six to 10 inquiries a year from people interested in earning a master’s degree in genetic counseling, but potential students have to leave Nebraska to pursue a degree. The problem is that many students, upon graduation, stay in the area they trained and don’t return to Nebraska, said Brad Schaefer, M.D., medical director of Munroe-Meyer Institute at UNMC and chief of clinical genetics.
“This will give Nebraskans the opportunity to earn this type of degree without leaving the state,” Dr. Schaefer said. “It’s unique in that it allows students to stay in their home communities, doing most of the first year of curriculum in their home and then do their clinical training in Omaha or one of its satellite clinics.”
Clinical sites outside Omaha are: Regional West Medical Center in Scottsbluff; Kearney Medical Clinic in Kearney; Indian Health Service Hospital in Winnebago; and the Black Hills Pediatric Offices in Rapid City, S.D.
Bulk of state’s genetic counselors at UNMC
Although there are no accredited genetics counseling programs in Nebraska, Dr. Schaefer said Nebraska is fortunate not to have a shortage of genetic counselors. It has eight, six of whom work at UNMC. He credits Dr. Buehler with the success of the program.
“Dr. Buehler has been a leader in the United States in genetics programs,” Dr. Schaefer said. “People all over the country ask him what makes our program so strong. Many states don’t have genetics specialists. In a state of 1.5 million people it’s phenomenal that we have a group of 20 people in Nebraska who specialize in genetics.
“We have one of the coolest programs in the country. We see patients from about six different states,” he said.
Dr. Schaefer said though the funding is a one-time allocation, the institute will work to secure additional funding for the program. Because much of the institute’s services are not reimbursable by insurance, it depends on grants and donations to provide services.
Helping families
Beth Conover, a genetics counselor at Munroe-Meyer Institute, said she has one of the worst and best jobs in the world. She tells expecting couples and parents that their child may die or will live with a disabling mental or physical disease, but she also gives families hope, support, education and a wealth of resources that help the families lead as rewarding and normal lives as possible.
“Children are one of our most vulnerable areas,” Conover said. “In genetics we have to tell people things that will affect their life in a big way. It can be extremely painful for parents to be on the receiving end of that kind of news. But I wouldn’t be doing this if I didn’t think we were making it better for families.
“It takes empathy and compassion, as well as the ability to communicate the science in a way people can understand. Parents say the diagnosis is important, but equally important is finding out how to best care for their child and get on with their lives. It’s an honor to work with our patients in this way,” she said.
Armed with information
Jeff and Erin Horstmeyer of Sioux Falls, S.D., are just one of many families who say they benefit from the genetic counselor services of Munroe-Meyer Institute. Their 2-year-old son, Samuel, was born with a genetic condition called microcephaly, which has caused developmental disability. Erin Horstmeyer said Samuel can sit but cannot yet crawl, walk or talk, is blind and has had a few seizures.
They don’t know what the future holds for their son, but they say specialists at the Munroe-Meyer Institute have given them information about the medical diagnosis, as well as the information and support they need to take care of their son.
“It is very important to have someone knowledgeable on how to care for our child, as well as the diagnosis,” Erin Horstmeyer said. “Knowledge is power. We’re able to know what to expect. The information we’ve been given is invaluable, not only for taking care of our son, but also in planning for future children. There’s a risk it could happen again. It helps to be able to know about what we’re facing in the future.”
She said her family makes at least one visit a year to Munroe-Meyer specialists.
“It’s a very positive and upbeat visit. It is a support system too. We come back from our visits feeling rejuvenated,” she said. “We can handle this. We’ve been told we’re doing good things as parents.”