The University of Nebraska Medical Center Munroe-Meyer Institute has
joined three other states to form a consortium sharing $1.3 million to
establish accredited masters degree programs in genetic counseling. Funding
for the consortium was made possible by an appropriation in 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.
The University of Arkansas for Medical Sciences in Little Rock 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 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.
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.
In 2004, UNMC will receive $276,000, which will be used to collaborate
with other institutions to establish the two-year masters degree program.
In Nebraska, about two to three students could be accepted into the program
each year, beginning January 2005.
Following a two-week orientation in Little Rock, 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, health disorders, as well as psychosocial
and counseling issues. The second year will be spent doing clinical and
laboratory work.
UNMC typically gets six to 10 inquiries a year from people interested
in earning a masters degree in genetic counseling, but the potential students
have to leave Nebraska to pursue a degree. The problem is, upon graduation,
many students stay in the area they trained and dont 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. Its 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.
Though 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,
said Dr. Schaefer. People all over the country ask him what makes our
program so strong. Many states dont have an genetics specialists. In a
state of 1.5 million people its 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 institutes services are not reimbursable by insurance, it depends
on grants and donations to provide services.
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 wouldnt be doing this if I didnt 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 getting on with their lives. Its an honor to work with our patients
in this way, she said.
Jeff and Erin Horstmeyer of Sioux Falls, South Dakota, 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 dont know what the future holds for their son, but they say specialists
at Munroe-Meyer have given them information about the medical diagnosis,
as well as 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. Were able to know what to expect. The information weve been
given is invaluable, not only for taking care of our son, but also in planning
for future children. Theres a risk it could happen again. It helps to
be able to know about what were facing in the future.
She said her family makes at least one visit at year to Munroe-Meyer
specialists.
Its 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. Weve been told were doing good things as parents.
Organized in 1959, MMI is a federally designated University Center of
Excellence in developmental disabilities education, research and service
that provides specialized health care for children and adults with genetic
disorders, and physical and developmental disabilities. Services include
genetic testing and counseling; child psychology; cerebral palsy clinics
and craniofacial disorders clinic; developmental screening; child behavioral
services; and services for children with diabetes and other hormone problems.
The institute also provides education and resources and is dedicated to
the research into prevention and treatment of genetic disease.