More knowledge needed on genetic-testing issues

Psychologists point to a need to educate other professionals --and each other--about psychosocial aspects of genetic testing.

By Bridget Murray
Monitor staff

The rise of genetic testing for cancer and other diseases triggers troubling questions for people with a history of cancer in the family, particularly for those whose relatives have been struck with the disease at early ages: Should they undergo the testing? If they test positive, is it a death sentence or rather a motivator to prevent cancer's onset? If they get the testing, will that pressure other family members to do the same?

There are no easy answers, but there is help to be gained from psychologists, who with their specialized training in tackling depression, uncertainty and anxiety, are uniquely qualified to aid patients in their struggle to find answers and arrive at "decisions they can live with," says psychologist Sandra B. Haber, PhD, an independent practitioner who works with cancer patients in New York City.

Before psychologists can effectively provide that help, however, Haber says much more education is needed on all sides: Psychologists need a basic understanding of genetic testing, and other health professionals working with genetics need education about what psychologists offer test recipients and when to refer them to psychologists. Thus far, genetics training for these groups has been scarce, but educational opportunities are expected to grow.

At present, fewer than 100 psychologists are researching genetic testing and working with patients undergoing it, but as genetic knowledge explodes, so too will the need for psychologists in the area, predicts Andrea Farkas Patenaude, PhD, chair of the APA Advisory Council on Genetic Issues.

"Genetics is a revolution in medicine that has many emotional ramifications, and jobs for psychologists in areas related to genetics will grow in great numbers over the next decades," says Patenaude, a researcher and assistant professor at the Dana-Farber Cancer Institute, a teaching hospital of the Harvard Medical School system in Boston.

In fact, now that genetic testing has moved beyond research settings--all physicians can offer it to their patients--psychology's role is even more critical, Patenaude says.

"It used to be you could list the breast-cancer testing sites on your hand," she says. "Now any doctor in the U.S. can have a patient tested, so we need to teach them about helpful psychological interventions and roles psychologists can play."

Touting psychology's contributions

Heeding the call for mutual education, APA convened the Advisory Council on Genetic Issues two years ago. The group launched an effort to inform mental health professionals about genetics and raise health professionals' and researchers' awareness about psychology's role in genetics decision-making. The advisory council's work is temporarily suspended, due to a lack of funding, but APA's Council of Representatives has deemed health genetics an important issue for the association, and attempts are being made to find a home within APA for genetics work to continue.

Last October, the Advisory Council on Genetic Issues organized a five-day workshop with funding from the National Institutes of Health (NIH). The workshop brought together 27 young investigators in social science and biomedical fields related to cancer genetics and an international faculty of medical scientists, psychologists and biostatisticians to discuss the value of multidisciplinary collaboration in genetic research and service provision.

Behavioral researchers discussed some of their recent findings about testing--which aspects of it cause stress and anxiety, for example, and how it affects whole families. (See article on page 16 for research details.)

Meanwhile, practitioners and genetic counselors pinpointed areas where psychologists' help is needed, including:

* The agony of deciding. While genetic counselors are equipped to teach patients about the basics of genetic testing--how genes are inherited, what risk they have of carrying a gene mutation and what the test means--they usually deliver that information in one session. They don't usually have the time, and their patients often don't have the insurance coverage, for them to address the mental anguish that the decision may evoke, says psychologist Ann-Marie Codori, PhD, who researches genetic testing at the John's Hopkins University School of Medicine.

Thus, it falls to psychologists to help patients through the uncertainty, anxiety and depression that could accompany a decision. One source of unhappiness is unresolved grief over a lost family member, psychologists say.

Another is the limits that a test result could impose on people's lives, such as a decision not to have children, says psychologist Carol Goodheart, EdD, an advisory council member and president of Div. 42 (Independent Practice).

* The impact on families. Families may spar over the decision about testing because if one person is tested, others may feel compelled to do so, too, says Goodheart. Then, those who test negative often experience survivor guilt, while the carriers of cancer gene mutations struggle to accept their lot. Psychologist Robert Croyle, PhD, associate director for behavioral research at the National Cancer Institute (NCI), says siblings are especially prone to disagree about the benefits and drawbacks of testing, and may need psychologists' help to reach consensus.

* The handling of results. People's response to test results varies considerably according to personality, mental stability and other factors, says Goodheart. Some, particularly those who test positive as cancer carriers, may need psychologists' help fighting feelings of resignation and defeat. Proactive alternatives include a new regimen of diet, exercise, regular cancer screenings and, possibly, prophylactic surgery.

Genetics training for providers

To raise physicians' awareness of psychologists' contributions in these areas, the APA Advisory Council contributed to a physician-oriented CD-ROM about genetic testing that was developed by the U.S. Centers for Disease Control and Prevention. The CD-ROM emphasizes the need for teamwork among physicians dealing with genetic testing and includes information on the potential role of psychologists on such teams.

One way to promote such teamwork is to develop a network of psychology providers that physicians could use for referring patients, says Jo Linder-Crow, PhD, APA's director of continuing professional education and staff liaison to the advisory council.

But before a substantial network can be built, more psychologists need a basic, yet solid, understanding of genetics and testing, adds Linder-Crow. That understanding begins with graduate education..

So far, however, graduate training in psychology includes little or no coursework in genetics, which Patenaude and Codori view as problematic. Both of them give talks on genetics at the postdoctoral level. And they note that genetics-related postdoctoral training grants are available for psychology researchers from sources such as the National Human Genome Research Institute (NHGRI).

Also needed is continuing education (CE) for psychologists in the area of genetics, notes Linder-Crow. In a recent survey of health-care professionals that included practicing psychologists, conducted by Georgetown University as part of a grant from the Human Genome Education Project, more than half of the psychologists responding said they'd benefit from it.

Patenaude is touting the need for genetics education in psychologists' doctoral training in her role as APA's representative on the NHGRI­sponsored National Coalition for Health Professional Education in Genetics.

The group, which includes 25 researchers and educators representing professional organizations in medicine, social work and biotechnology, among other areas, is identifying essential genetic information to include in health curricula.

APA itself is working with several other health organizations to provide up-to-date information on genetic testing to health professionals. The effort, based at the Georgetown University Medical Center and funded by NIH's Human Genome Project, includes a CE workshop on genetics, offered to psychologists at APA's Annual Convention in Boston, Aug. 20­24. Genetics-related CE is also available through such organizations as the American Cancer Society, notes Croyle.

Considering psychology's importance in the uncertain, anxiety-provoking world of genetic testing, genetics-related training ought to be a top priority for the field, says Goodheart. "Issues surrounding genetic testing are really psychological because a person is not physically ill when he or she receives genetic information, and may not become ill for a long time, if ever," says Goodheart. "There is nothing with greater psychological impact than telling a person his or her life is at risk. That is why psychologists should participate as the standards of care and training are being established for this multidisciplinary field."

APA's CE workshop on genetics will be held Monday, Aug. 23, from 9 a.m. to 1 p.m. at the Park Plaza Hotel in Boston. Enrollment forms for the workshop are available in the May Monitor issue and can be downloaded from APA's web site, www.apa.org/convention, or obtained by calling (800) 374-2721, ext. 5991.



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