|
Patricia McCarthy Veach
Educational Psychology
|
|
Since completing the mapping and sequencing of the human genome
in 2003, scientists have isolated genes that identify numerous diseases-such
as cancer, diabetes, and Alzheimer's-that offer the prospect of
future treatments and cures. With the rapid advancement of genetic
technologies, genetic tests are becoming a basic part of health
care, which some call the most significant medical advancement since
the introduction of antibiotics. And while many want to know the
secrets their own genes hold, few are prepared for the enormous
effect this genetic knowledge may have, not only on their own lives,
but on all who share their DNA.
Patricia
McCarthy Veach, professor of counseling and student personnel
psychology in the College of Education and Human Development, along
with colleagues from the University of Minnesota Institute
of Human Genetics and its Center
for Bioethics, studies the challenges faced by genetic counselors
and other health care professionals when dealing with genetic issues.
In a groundbreaking study, McCarthy Veach documented and established
nationally accepted standards to prepare health care professionals
to provide skilled care amid the complex medical, ethical, social,
and legal issues in genetic counseling.
About genetic testing
While individual genetic disorders are rare, collectively they affect
more than 13 million people in the United States. The majority of
genetic testing falls into the following categories:
Predictive: Designed to predict the chances
of a person developing an illness, such as Huntington disease, before
symptoms occur.
Prenatal: Test for potential diseases
in the fetus in utero.
Diagnostic: Like other medical tests,
given to identify the cause of symptoms.
Screening: Used to screen a specific population
for a certain disorder.
What the research shows
McCarthy Veach and her co-investigators at the University undertook
a three-year study to identify the issues encountered when patients
present genetic concerns in the primary care setting. Funded through
a grant from the Josiah Macy Jr. Foundation, McCarthy Veach and
her colleagues conducted a national study of physicians, nurses,
and genetic counselors that identified the following six areas as
the most prevalent causes of genetic-related challenges in primary
care:
Confidentiality: The results of genetic tests
involve not only the patient, but often include children, siblings,
and parents who share a susceptibility to genetic risk. Testing
one person can disclose risk information about many others.
Discrimination: Clinicians and patients often
raise concerns that sharing genetic information might result in
loss of insurance or employment because of a possible future health
condition predicted by genetic testing.
Diversity: Cultural issues have a profound impact
on the way people deal with medical issues. Primary care providers
need to incorporate other worldviews into their discussions of genetic
risks and testing options.
Informed consent: Genetic information can carry
a heavy psychological burden for patients and their families. Unlike
clinical care where informed consent is normally required only for
invasive procedures, in genetic medicine, informed consent means
the patient must be thoroughly informed of all potential benefits
and risks of genetic testing.
Keeping up with genetic knowledge: With genetic
research evolving at a rapid rate, keeping up with new information
presents a major challenge for primary care providers, who often
have little genetics training.
Uncertainty: Possibly the most difficult challenge,
uncertainty often relates to doubts (on the part of the patient
or provider) about the usefulness of a genetic test, the purpose
for which the test is being conducted, and its possible implications
for the patient.
Based on the challenges identified from the research, McCarthy Veach
developed an in-depth continuing medical education course that presents
a case study for each challenge. Each case puts a different challenge
in context, and provides background information about the specific
genetic conditions related to the case. As participants navigate
their way through a range of potential options for guidance using
the "non-directive" approach of genetic counselors, the
coursework guides them through several ways of thinking about the
issues, offers thought-provoking information about the ramifications
of each choice, and ultimately explains the best option.
What others say about this research
According to Betsy Gettig, director of the genetic counseling program
at the University of Pittsburgh, "McCarthy Veach and her colleagues
have contributed significantly to the landscape of the practice
of genetic counseling. They have provided a much-needed roadmap
to assist health care professionals and their clients through the
complex process of decision-making and informed consent."
"Pat McCarthy Veach's contributions to the genetic counseling
process have been significant," says Anne Greb, director of
the genetic counseling program at Wayne State University. "Her
original research, coupled with her expertise in counseling theories
and techniques, has enriched the genetic counseling field by helping
us to better meet the needs of our patients and their families."
Why this research matters
According to the National Center for Biotechnology Information,
more than 15,800 known genetic conditions exist-with new ones discovered
almost daily. "It is conceivable that genetic testing will
touch everyone at some point during their life," McCarthy Veach
says, "yet even as genetic testing becomes more routine, the
issues surrounding it will continue to grow in complexity."
With only 3,000 board-certified genetic counselors in North America,
it will fall to primary care providers to deal with the more routine,
but no less complicated, issues of genetic medicine. McCarthy Veach's
pioneering research forms a foundation upon which genetic counselors
and other health care professionals can provide compassionate, ethical
help to a growing number of patients as they navigate unexplored
medical territory.
For more information:
Patricia McCarthy Veach, 612.624.3580,
veach001@umn.edu
Reprinted with permission from ResearchWorks,
an online publication of the College of Education and Human Development.
|
