Messenger - Vol. 3, No. 3, Page 20
Spring 1994
Alumni Profile
Counselor deciphers genetic legacy

     You could say that Linda Taylor Nicholson, Delaware '75, '81M,
has built a career on inheritance. Not the "green" kind. The gene
kind. As a genetic counselor at the A.I. duPont Institute, a
children's hospital in Wilmington, Del., Nicholson helps families
understand the cause and progression of hereditary diseases, from
dwarfism to cystic fibrosis. She also helps them assess the risk that
a disorder will be passed down in later generations.
     A lifelong resident of Delaware, Nicholson became interested in
genetics as an undergraduate at the University of Delaware. "At that
time, genetic counseling was a very young field," she says. While
genetic research involves "extracting DNA and laboratory stuff," she
says, genetic counseling involves working closely with the geneticist
as a diagnosis is made and helping the family understand and cope with
the information.
     According to Nicholson, a common concern is, "Will my other kids
have this too?" To answer that question, she obtains a medical history
from the affected family and constructs a family tree. Genetic
counselors review the family history, assist with the exam of
appropriate family members and suggest any additional laboratory tests
or X-rays that might be needed to confirm a diagnosis. There also are
many emotional needs that are part of a family's experience, and the
genetic counselor serves them as well, she says.
     "Many times, the diagnosis comes as a surprise," says Nicholson.
"People of average height are often shocked, for example, to learn
their infant is affected by dwarfism. 'How could this happen to us?'
is a typical reaction," she says. "I help them understand how it
happened and then how to deal with it."
     When she entered the University, Nicholson says she expected to
go on to medical school, but that plan changed as a result of what she
calls "a disagreement with organic chemistry." Her adviser, Arnold
Clark, now professor emeritus of life and health sciences, was
instrumental in developing her interest in genetics, she says, and
after graduating with a degree in biology, she received a master's in
counseling at Delaware and a master's in genetic counseling from
Rutgers University. A member of the board of the National Society of
Genetic Counselors for the past four years, she has been at the
institute for the last 17.
     The institute serves children with life-threatening illnesses,
chronic diseases, multiple disabilities and complex health problems.
There are more than 4,000 single gene disorders, in addition to
multiple chromosomal problems. Many of these disorders are treated at
the institute, including bone dysplasia (dwarfism), Marfan syndrome
(excessively tall people), muscular dystrophy, cystic fibrosis, Down
syndrome and spina bifida.
     Counseling children with dwarfism and their families has been one
of Nicholson's major responsibilities. Achondroplasia, a form of
dwarfism, is one of the most common bone disorders. It affects bone
growth, not life expectancy or intelligence, she says. Due to a
single, dominant gene, achondroplasia occurs at the time of
conception. "There are 100,000 genes in most people, and only 8 or 9
may be really harmful," Nicholson says.
     Traditionally, a popular distinction is made between midgets, who
are proportionately short, and dwarfs, whose heads and trunks are
large in proportion to their arms and legs. The new "politically
correct" term refers to a dwarf as a "little person," just as retarded
children may be referred to as "developmentally delayed," Nicholson
says.
     In counseling families, Nicholson explains that if an individual
with achondroplasia has children, there is a 50 percent chance the
children will inherit the disorder. This chance is increased to 75
percent if the partner also has achondroplasia. "There also are
complications related to having children, but these are mainly related
to the birth itself," she says.
     Nicholson offers everyday, practical advice to her young little
people, as well. For example, if a youngster has trouble reaching down
to pull up clothing, she recommends such devices as special loops and
Velcro attached to the pants, which have proven effective for other
patients.
     "Those affected with achondroplasia can lead happy and productive
lives," she says. She counts among her former clients doctors,
lawyers, teachers and musicians. While attending the University,
Nicholson met her husband, Michael Larkin, Delaware '73, a published
composer and chairperson of the voice department at the Wilmington
Music School. Linda sings for and Michael conducts the New Ark
Chorale. The couple live in north Wilmington with Nicholson's 12-year-
old son, Daniel.
                                  -Michael W. Hail, Delaware '95 Ph.D.