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