CONTACT: DEREK MAURER
2130 Medical Laboratories
Iowa City IA 52242
(319) 335-8964; fax (319) 335-8034
Release: Feb. 11, 2000
UI nursing researchers win grant to produce CD-ROM on ethical issues of
IOWA CITY, Iowa -- Investigators in the University of Iowa College of Nursing
have won a three-year, $648,556 federal grant to develop and test a CD-ROM-based
education program for nurses on ethical issues related to genetic testing.
Janet K. Williams, Ph.D., is principal investigator for the project. Williams
is associate professor of nursing at the UI, a genetics nurse specialist and
past president of the International Society of Nurses in Genetics. M. Patricia
Donahue, Ph.D., professor and associate dean for academic programs in the
College of Nursing, is co-principal investigator. Donahue has written extensively
on the history and philosophy of nursing, nurse education and ethics, and
teaches ethics in the college.
The project will result in a CD-ROM that practicing nurses and students
can use to learn about ethical issues related to genetic testing, with the
ultimate goal of increasing nurses' ability to help patients and families
make appropriate decisions about genetic testing. First, though, the project
team will develop the content for the CD-ROM and evaluate its effectiveness
with nurses and nursing students, who will be asked to critique the learning
tool and answer questions about genetics and ethics before and after using
"The content of this product is going to be novel to most nurses,"
Williams said. While nursing students typically receive some instruction in
both ethics and genetics, Williams explained, real life situations are usually
far more complex than textbook examples. "It's not enough to raise the
ethical consciousness of students and practicing nurses," she said. "Rather,
nurses must learn how to think critically so they can develop the confidence
to act on their judgment."
As science learns more about the human genome and investigators discover
genetic markers for more diseases, more people confront the possibility of
knowing whether they are predisposed to specific illnesses. Whether to seek
genetic screening for debilitating and even fatal diseases becomes a momentous
decision in an individual's life.
"The bottom line is that genetic information may be used to predict
a person's future health," Donahue said. "And it's not just patients
who are affected -- it's also their parents, siblings, children and spouses."
Donahue added that nurses, because they work most directly with patients,
can serve as gatekeepers to ensure that ethical problems are avoided. "Nurses
are crucial to this whole issue," she said, because they are the health
care professionals most responsible for seeing that patients are fully informed
of their choices and that information about them is not disclosed inappropriately.
Williams said the CD-ROM will contain three learning modules. The first
will give users information on ethics and the second will cover genetics.
The third module, Williams said, will present two complex clinical problems
involving genetic testing for breast cancer and Alzheimer's disease. These
case studies will be built around scenarios in which an individual is considering
seeking genetic testing, with actors from the UI playing the roles of the
individual and her or his family members.
"We'll include points at which nurses need to make decisions about
the care they are giving," Williams said. As the user encounters new
people affected by the individual's decision, different care choices will
develop into their own story lines, resulting in a complexity that approximates
real life. "In a very real way," Williams said, "the student
becomes one of the participants in the story."
Once initial development of the three learning modules is complete, in about
a year and a half, experts in genetics, gerontology, oncology and other fields
will evaluate the CD-ROM and, based on their suggestions, the project team
will make adjustments to the content. Finally, nursing students at the UI,
Allen College in Waterloo and Mount Mercy College in Cedar Rapids, along with
practicing nurses at Mercy Hospital in Iowa City and North Iowa Mercy Health
Center in Mason City, will take part in testing the CD-ROM's effectiveness
as a teaching tool. The students and nurses will take tests to assess their
knowledge of genetics and ethical issues before and after using the CD-ROM.
Williams said the CD-ROM format is effective because it is interactive and
puts control over the timing and pace of learning in students' hands. This
product will be particularly useful for nurses who live and practice some
distance from educational facilities, Williams said.
The UI College of Nursing is well suited to develop a CD-ROM on ethical
issues in genetics nursing, Williams said. "We have a long history of
developing knowledge in medical genetics and nursing genetics" at the
UI, she said, while the college also has the technical expertise to produce
interactive multimedia products.