The Johns Hopkins Gazette: September 28, 1998
Sept. 28, 1998
VOL. 28, NO. 5


Genetic Science Moves Onto Fast Track

Dean Sue Donaldson wants nurses--and patients--to know what they're made of

By Greg Rienzi
The Gazette

Johns Hopkins Gazette Online Edition

On a recent drive to work, School of Nursing dean Sue Donaldson noticed a bumper sticker with small lettering on the car in front of her. Donaldson admits she was a bit too close to the automobile, and she expected the sticker to read "If you're this close, you're tailgating!" So Donaldson was a little surprised when she read the words "You, out of the gene pool!"

For Donaldson, it was less of an insult and more of an example of how much genetics was becoming a part of our culture.

But this holder of a doctorate in physiology and biophysics with experience in gene cloning doesn't need bumper stickers to know that. Donaldson is well aware of the explosion of genetic science and understanding in the past several years.

For example, in just the past year huge advances have been made in the cloning of animals, and recently the U.S. government stepped up its timetable to identify all the estimated 80,000 genes in human DNA as part of its 15-year Human Genome Project.

"Genetic research is a revolution that will impact all of health care and how society views health care," Donaldson says. "In my lifetime there will be a social revolution spawned off of biological and genetic advances."

To confront this "revolution," Donaldson has the School of Nursing on the fast track toward integrating molecular, epidemiological and clinical genetics throughout the graduate and undergraduate curricula, in addition to offering new genetic-specific courses at the school. The goal, according to Donaldson, is for all the School of Nursing's students to have "some level of knowledge about genetics and genetic information" upon graduation, and for Hopkins to lead the way toward integration of genetic science content at other nursing schools.

The purpose of this initiative, according to school administrators, is to educate students to the advances in genetic science so that they will be prepared to incorporate genetics into their professional roles as health care providers. Imbued with genetics information, nursing graduates will then be able to help families and individuals understand the complex information, emotional responses of patients and other health care issues related to genetics.

The school has already integrated "quite a bit" of genetics into the curriculum, Donaldson says, and she expects full integration of genetics by the end of this academic year. And, she adds, it can't come soon enough.

"[Genetics] is becoming so pervasive in everybody's life. Lay people can get this information. We now have a situation where intimate information about an individual is coming out, such as someone will find out they have a mutated gene that predisposes them to a certain type of cancer and then these individuals think that is [their destiny] ... that they cannot change their future," Donaldson says. "But that's not the case. Not everyone who carries the mutated gene will develop the disease. [Genetics research] is just a tool, another piece of information that offers those of us in health care an opportunity where we can alter lifestyle influences that are found to precipitate manifestation of the disease. Genetics' primary use is for disease prevention."

In an effort to bring more attention to the genetics issue, the Institute for Johns Hopkins Nursing recently co-coordinated and hosted a knowledge development conference titled "The State of the Art and Science of Genetic Nursing." The two-day conference, sponsored by a grant from the Ethical, Legal and Social Implications Research Program of the National Human Genome Research Institute at the National Institutes of Health, brought together nursing faculty from Hopkins and other major universities with representatives of nursing journals and directors of continuing education from nursing specialty organizations.

"It was such a coup to have the conference here at Johns Hopkins," says Donaldson, who participated in gene cloning experiments as part of her postdoctoral work at Smith College. "It was historic in terms of the audience we were able to bring together to discuss this important subject. With Hopkins' long history of genetic research, we were able to get the lead speakers we needed from basic science and medicine."

One of the conference's speakers, Gwen Anderson, says that educating nurses about genetics is vital because it allows them to use the information to help them care for their patients. For instance, if a patient finds out that one of his parents has a gene that is associated with an inherited disorder, such as Huntington's disease, the nurse will be able to counsel that patient as to what that means to him and how he might be able to prevent the disease from manifesting itself.

"Nurses need to know genetics so that they can talk to patients who have genetic concerns," says Anderson, a registered nurse and a research associate at the Shriver Center for Mental Retardation Inc., one of the conference coordinators. "They can then also initiate genetic thinking into his or her own practice."

Anderson gave another example in which an uninformed nurse might release sensitive genetic information about a patient without knowing its implications, resulting in the patient "freaking out" when told a family member has a mutated gene.

"Part of the message we are trying to get out is that genetic information is not like other medical information. It's very sensitive, very personal," Anderson says. "Without any genetic counseling experience, nurses can be quite dangerous in these circumstances."

Donaldson says not enough nursing schools are attempting to integrate genetics into their curricula.

"Only a few schools of nursing have [courses] related to genetics, and the few that do put them into specialized programs such as master's degree specialties," Donaldson says. "But every professional nurse needs some knowledge of genetics. And what we [at Hopkins] are going to do that is unique is inform students [about genetics] at the very beginning of their undergraduate education. It's very exciting."

Yet Donaldson adds that to educate the students, they must first educate the faculty. So next month the school will begin a series of workshops in which faculty will be taught by genetics experts, including some researchers in the schools of Medicine and Hygiene and Public Health, so as to orient them quickly to the genetics field.

To find out what faculty already know, Sharon Olsen, an assistant professor at the School of Nursing, helped develop a survey that asked the nursing faculty specific questions about genetics. Olsen says the results of the six-month survey, just recently completed, were that most faculty have more than a rudimentary understanding of genetics, but that knowledge has to be updated to keep up with recent advances.

Olsen says that the upcoming workshops will help faculty turn the information they learn into stories and analogies that will allow them to make the links to what students already know and help facilitate the learning process.

"This is the wave of the future. Health educators need to make a stand and implement this for health care," Olsen says. "Dean Donaldson has been a master of support for this program, as she is very supportive of faculty efforts as a whole."

Donaldson, mentioning that Hopkins was recently ranked sixth in the top 10 national schools of nursing as ranked by U.S. News & World Report, says she finds it hard to believe any school can be put into the top 10 without integrating genetics into the undergraduate and graduate curricula.

"Of all the health care professionals integrated with people and their families, [nurses] are the ones who spend the majority of time with them," Donaldson says. Nurses will take a front role in genetics. We have to."

As for other nursing schools following suit, Donaldson adds, "I'm counting on it."