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"It's not just the same as a standardized approach
to pain medication, where everybody who has pain is
going to have codeine," Halsey Lea said. A genetic
explanation for why certain patients are always asking
for pain medication may allow nurses to see them in
a more sympathetic light, Masny said.
Questions and quandaries. Although testing to see how
a patient reacts to a drug has different ethical and
social implications from testing to see whether a patient
has an incurable disease, nurses still will have to
be prepared to deal with potentially devastating emotional
blows, Prows said. "What happens if a patient has
a test done and results indicate only a few drugs or
no available drugs will work? That's going to be some
tough counseling."
Or what if genetic tests for drug efficiency in combating
a certain illness show something unexpected, like a
marker for a completely different disease, she asked.
A similar scenario already has occurred, she said, when
a genetic test for heart disease risk later was discovered
to reveal an increased risk for early-onset Alzheimer's
disease.
"Now what do you do?" she asked. "Do
you call those people back who thought they were being
tested for cardiovascular risk? Should you tell them
about the possible risk for Alzheimer's disease?"
Nurses also will have to discuss whether and how their
patients should share information with family members.
If a patient responds positively or negatively to a
therapy because of genetic makeup, other family members
may have the same response and could benefit or be harmed
in the future from the therapy, Halsey Lea said. "How
does that fit into the issue of patient privacy?"
she said.
Health care workers also will have to grapple with
questions and scenarios regarding access and payment
for the new therapies. Just because new tests and therapies
come on the market doesn't mean they will be available
to everyone, Halsey Lea said. Many people can't afford
new medications now, let alone the cost of a test. AIDS
has shown that complicated, disease-targeted therapies
are expensive and not always easy to obtain.
The age-old health care question of who pays for what
will spawn new ethical issues. Can insurance companies
require patients to have a test to show they would be
genetically responsive to a particular therapy before
authorizing payment? Will patients feel coerced into
testing? What if the patient doesn't genetically respond
to any therapy or wants to try one that genetic markers
predict won't work? Or what if tests show a treatment
may add a few months to their lives, but won't help
them in the long run?
"Being prepared and thinking about the possible
limitations is important," said Janet Williams,
Ph.D., RN, a nursing professor at the University of
Iowa and past president of the International Society
of Nurses in Genetics. "Educators need to prepare
the nursing workforce to understand what individual
genetic medication profiles might be and to prepare
nurses to use them in patient care regarding medication
selection, education and monitoring, and to think of
ways to protect the public against possible abuses."
Nurses also must understand and be prepared to explain
that targeted medicine, with all its exciting potential,
will never be the solution to all medical problems,
nor will it affect or change a lot of the things nurses
do, those who study genetics say.
Nurses will continue to take vital signs, ask questions,
talk to patients and families and assess conditions.
Genetic information will just add one more piece to
the picture. "All that [nurses do] is still going
to be there," Seelig said. "It's just going
to be more complicated."
The integration of genetic information into health
care represents broad possibilities for disease management,
including risk assessment, diagnosis, detection and
treatment, said Paula Trahan Rieger, MSN, RN, director
of international affairs for the American Society of
Clinical Oncology and immediate past president of the
Oncology Nursing Society. But, she said, she does not
believe that targeted medicine will significantly change
basic nursing care. "The skills that nurses have
in caring for people will transcend whatever therapies
we see in the future," she said.
Frazier noted that Florence Nightingale focused on
her patients' environment, opening windows in a room
to let in air and light. "We will continue to do
that, only with different tools," she said. "We
will use molecular tools in the future."
Contact Cathryn Domrose at kaguilar@well.com
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Since the beginning of the profession,
health care workers across the spectrum have worked
mainly with measurements of flesh, bone and blood.
Heart rates. Muscle mass. Blood sugar. Bone density.
With the advent of genetically targeted medicine
and other genetic therapies, they will suddenly
be dealing with concepts of molecules, proteins,
strands of DNA.
Making the jump from to the physiological to
the cellular level of thinking can seem intimidating
to many health care professionals, and nurses
are no exception.
"Many nurses in their basic training never
have had a strong scientific background in biology
and genetics," said Paula Trahan Rieger,
MSN, RN, director of international affairs for
the American Society of Clinical Oncology and
immediate past president of the Oncology Nursing
Society. "Nurses will need to recognize the
importance of a background in cellular biology
and genetics to understanding the therapies of
the future."
An increasing number of nursing schools are adding
genetics courses or, at the least, including genetics
content in the existing curriculum. The department
of physiological nursing at the University of
California, San Francisco, has added a genomics
graduate program that allows advanced practice
nursing students to pair genomics with specialties
in oncology, cardiovascular illness and gerontology.
Agnes Masny, MSN, MPH, RN, a nurse practitioner
specializing in cancer risk assessment for the
Family Risk Assessment Program at Fox Chase Cancer
Center in Philadelphia, and Dale Halsey Lea, MPH,
RN, assistant director of the Southern Maine Genetics
Services Foundation for Blood Research in Scarborough,
Maine, recently wrote a genetics chapter for a
med/surg nursing textbook.
But nursing schools that are including genetics-either
as part of a general nursing education or as a
specialty-are still in the minority, said Cynthia
Prows, MSN, RN, clinical nurse specialist in genetics
at Cincinnati Children's Hospital Medical Center.
"It's happening," she said, "but
it's not the routine."
She noted that faculty members who attended the
Genetics Summer Institute at Cincinnati Children's
five or six years ago were mostly those who came
because of their own interest. But in recent years,
increasing numbers are attending at the request
of their nursing school deans.
A number of nursing specialty organizations and
national nursing associations have endorsed the
need for nurses to have a basic understanding
of genetics. The National Coalition for Health
Professional Education in Genetics has a long
list of core competencies in genetics for health
professionals, including understanding basic genetics
terminology, the range of genetic approaches to
disease and the ability to explain the influence
of genetic factors in the development of disease.
Prows sees a trend toward a broader-based genetics
education for nurses in all specialties. Exactly
who needs what level of genetics education still
needs to be determined, she said. For instance,
a nurse at the bedside might be able to explain
the concept of a genetically targeted medicine
to a patient, but may need to refer to a genetics
specialist or counselor for something more complex,
like a genetic indicator for cancer or an incurable
disease.
Much of the question of how much genetics nurses
will need to know is impossible to answer because
the field is still in its infancy and no one knows
how long it will be before genetically targeted
therapies will be readily available. What nurses
learn now about genetics may become obsolete in
a few years or even a few months.
That is why educators and advanced practitioners,
in addition to learning basic genetics concepts,
also need to learn how to keep up with the latest
genetic research, said Lorraine Frazier, DSN,
NP, RN, associate professor at the University
of Texas Health Science Center at Houston School
of Nursing.
"Now is not too soon for educators to prepare
themselves," said Janet Williams, Ph.D.,
RN, a nursing professor at the University of Iowa
and past president of the International Society
of Nurses in Genetics. "It's always better
not to be surprised."
-Cathryn Domrose
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