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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.

Articles include:

  • 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:
    Effects of 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

3/17/99

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.

 

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