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Release: Feb. 11, 2000

UI nursing researchers win grant to produce CD-ROM on ethical issues of genetic testing

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 CD-ROM.

"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.