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Treasure Map
(continued)

Page 3

 

Continued from Page 2

"Basically, how does it make them feel long term?" asked Jenkins, who is also a consultant with the National Human Genome Research Institute.

Code of ethics

The studies in social concerns with genetics have long coincided with the laboratory advances of the science. A companion ethics program was launched alongside the Human Genome Project to study the ramifications of scientific knowledge of genetics. In 2003, the U.S. Senate passed a long-delayed bill that prohibits discrimination on the basis of genetics to quall privacy fears. The bill is with the U.S. House awaiting action.

Calzone said ethics and related psychosocial research have been a multidisciplinary effort of nurses, behavioral psychologists and genetic counselors examining the outcomes of genetic testing. In a report she co-authored in the June MEDSURG Nursing journal, Jenkins wrote that genetic tools used by nurse researchers not only enhance the clinician's ability to interpret test results, "but assist patients and families with decision-making."

"Genetics is only one piece of the pie," Jenkins said. "You have lifestyles and you have behaviors. So a lot of what the nurse needs to do is help them understand this is not a black-and-white technology. It's still learning as we go in terms of what other genes may be out there that may influence this risk, or finding other genes that are indeed responsible."

Patients found to be at risk for colorectal cancer, Jenkins said, may need counseling for strategies in how to approach other family members who may be sick. Re-tests may be necessary to confirm positives or to correct mistakes. Patients also may need help in navigating insurance restrictions if procedures such as a colonoscopy are involved.

In the burgeoning area of pharmocogenomics, or targeted drug therapy, medications and dosages are delivered based on a patient's genetic markers [see "Molecular Matrix," NURSEWEEK, June 30].

Patients also may need reassuring about what it means to live with risk, and nurses are the natural outlet, said Dale Halsey Lea, MPH, APNG, RN, FAAN, a nursing consultant who has been working for the University of Maryland constructing strategies for building a genetics-trained health care workforce. "I think certainly patients are going to be talking more to nurses about their concerns, privacy and the long-term meaning of some of this information," Lea said. "How's that going to affect a patient's well-being? And how are nurses going to deal with things like [patient] screening fatigue? What we'll do is help people live with their conditions."

Stamp of approval

Since 1988, the International Society of Nurses in Genetics has worked to expand credentials for genetic researchers and instructors in nursing, Anderson said. Just within the last two years, the American Nurses Association began recognizing an advanced practice genetics nurse credential supported by ISONG. These are in addition to the knowledge and skill core competencies for genetics practice established in 2000 by the multidisciplinary National Coalition for Health Professional Education in Genetics.

With these professional avenues opening, collegiate nursing schools are starting to recognize the new career options for students. At the University of California, San Francisco, for instance, the School of Nursing offers master's-level programs in advanced practice genomics for oncology, gerontology and cardiology.

But otherwise, many schools, hospitals and some nurse specialty associations have been slow to adopt genetics instruction, said many of the experts. "There has to be a recognition by the profession that this genetic information is going to be important for the care that we provide for the future, and that hasn't happened yet," Jenkins said.

Lea said she would like to see hospitals and institutions adopt requirements for CE in genetics like it does for CPR, infectious disease "and even electrical safety. I think with the 'newness' of this field, it ought to be a requirement that nurses get updated … on genetics, broken down into areas like pediatrics, adult and prenatal."

Constant change

"Genetics can be a real fun field," Anderson said. "It can be a real challenge because it's interesting, ever-changing. And nobody can know everything about it … because it's continually changing, anyway."

The idea that science and nursing have only scratched the surface with genetics is an understatement. With the release of any research paper or study, critical new information could be released in any given specialty of genetics nursing. In covering the bases of her cancer specialty (hereditary nonpolyposis colorectal cancer), Jenkins said one of her top challenges is merely keeping up with the literature.