VARIOUS VIEWS RELATED TO GENETIC TESTING
by David S. Krantz, Ph.D. & Caryn Lerman, Ph.D.
Imagine that your sister has been told that she
carries the gene that predisposes her to cancer. Now you wonder
about your chances of developing cancer -- should you get tested?
What role should medical and mental health professionals play in
helping you cope with finding out your risk for a fatal disease?
And, furthermore, what responsibilities do the medical and mental
health fields have to provide patients with prevention strategies
that can offset the likelihood of getting diseases such as cancer
once they learn of their predisposition?
State-of-the-art research studies that address these and other
issues surrounding the psychological impact of genetic testing are
compiled in a special issue of Health Psychology, published by the
American Psychological Association (APA). "Medical technology is
moving ahead at a rapid pace. We need to study the psychological
consequences of people's reactions to getting this kind of medical
information. Subsequently, we need to know how to effectively
motivate people to prevent diseases to which they may be
predisposed," says editor and psychologist David S. Krantz, Ph.D.
In addition, Caryn Lerman, Ph.D., the guest editor for this special
issue notes, "Given the psychological complexities of genetic
testing, health psychologists can and should play a central role in
genetic testing research."
"The articles in this issue lay the groundwork for providing
psychology with an important link to the scientific revolution in
molecular biology," Dr. Krantz says. Articles cover diseases that
are inherited, such as cystic fibrosis, and diseases that people
are at high or low risk for developing, such as cancer. The
special issue also looks at the stress involved with taking a
genetic test as well as the distress of discovering you are at risk
for a disease.
- Stress and Genetic Testing for Disease Risk
Psychological researchers from the University of Pittsburgh
Medical Center and the Memorial Sloan-Kettering Cancer Center have
set up a model for predicting when it is beneficial and when it is
not beneficial to undergo genetic testing. According to the model,
reducing uncertainty is beneficial. But the model shows that when
you cannot prevent an outcome -- such as learning you will develop
Huntington's Disease -- it may not be beneficial. "Reducing
uncertainty is generally positive and can reduce distress, but
certainty about disease outcomes can have negative repercussions
for a patient's health and well-being as well," says psychologist
Andrew Baum, Ph.D., lead author of the article. "We are interested
in understanding when reduction of uncertainty is beneficial and
when it may be harmful," Dr. Baum continues. In addition, Dr. Baum
and colleagues are concerned with "the mental health consequences
of worrying about insurance coverage when a genetic predisposition
for a disease is discovered."
- Incorporating Biomarkers of Exposure and Genetic
Susceptibility Into Smoking Cessation Treatment:
Smoking-Related Cognitions, Emotions, and Behavior
Researchers from Georgetown University, Fox Chase Cancer Center,
The Robert Wood Johnson Foundation, the University of Arizona and
the National Cancer Institute collaborated to determine the
benefits and risks of providing feedback about their genetic
susceptibility to lung cancer to smokers in a low-intensity smoking
cessation program. Results indicate that giving smokers information
about their genetic susceptibility increased their motivation to
quit, but was not sufficient to overcome addiction. In fact, there
was some indication that smokers who were told about their genetic
risks, but could not overcome their addiction, became depressed.
"Our study indicates that it may be premature to offer genetic
information to smokers who are not in an intensive cessation and
counseling program. To see benefits, additional treatment, such as
nicotine replacement therapy, may be needed," says psychologist
Caryn Lerman, Ph.D., lead author of the study.
- Psychological Responses to BRCA1 Mutation Testing:
Preliminary Findings In one of the two largest studies to
date on the psychological impact of genetic testing for breast
cancer susceptibility, psychological researchers evaluated women
for stress before being tested for the gene that puts women at risk
for breast and ovarian cancer and tested their stress levels again
after they were given the results. All study participants were
educated and counseled about the cancer and genetic testing.
Results showed that although women who had survived cancer were not
alarmed by learning they carried a genetic mutation, women who had
not developed cancer experienced levels of distress similar to
patients recently diagnosed with cancer. "In the future, patients
seeking genetic testing may not have the level of education and
counseling that was available to these patients. Therefore we feel
these levels of distress are probably lower than what they would be
if the patients were not educated and counseled in relation to
genetic testing," says psychologist Robert Croyle, Ph.D., lead
author of the study. Underscoring the need for psychological
research to be taken into account when testing people for genetic
mutations, the study concludes that "as the debates regarding
cancer genetic testing continue, it is critical that biomedical
scientists and policy makers [utilize psychological research]
regarding the impact of testing on attitudes, behavior and
psychological functioning of participants."
Reference: Health Psychology, Vol. 16 No. 1
The American Psychological Association (APA), in
Washington, DC, is the largest scientific and professional organization representing
psychology in the United States and is the world's largest association of psychologists.
APA's membership includes more than 159,000 researchers, educators, clinicians,
consultants and students. Through its divisions in 50 subfields of psychology
and affiliations with 58 state, territorial and Canadian provincial associations,
APA works to advance psychology as a science, as a profession and as a means
of promoting human welfare.