How will genetic testing affect us emotionally?

Psychologists face ethical, empirical and clinical questions as science identifies the human genes that mark disease vulnerability.

By Scott Sleek

Monitor staff

Your client has just told you that she?s tested positive for a genetic mutation for breast cancer, but doesn?t want to tell her sisters. Do you try to convince her to change her mind, so that her sisters know they have a 50 percent risk of carrying the same gene? And if she refuses, are you obligated to alert the sisters to the possible risk they face, at the expense of confidentiality?

These are the kinds of thorny questions practitioners will face as science continues to identify the human genes that mark everything from disease susceptibility to personality states, say psychologists interested in genetics. And psychologists must play an active role in helping people learn about?and cope with?information on the way their genes affect their physical and mental health, said Francis Collins, MD, PhD, director of the National Human Genome Research Institute at the National Institutes of Health (NIH), during APA?s Annual Convention in San Francisco.

'I would expect that when the APA meets in five years, there will be much more discussion about genetics, because it will affect you, whether you?re a basic science-oriented person trying to understand the underpinnings of human behaviors or whether you?re a clinician who?s trying to help individuals wrestling with whether or not to be tested for this or that,' Collins said.

In fact, psychologists are already addressing these issues. APA two years ago created an advisory council on genetics to explore psychologists? potential contribution to the genetics revolution in such areas as research, training and education, and services to patients, said Alice Chang, PhD, of the Academy for Cancer Wellness in Tucson, Ariz., and the past co-chair of the council. As part of that effort, the council, along with APA?s Board of Professional Affairs, organized the convention symposium.

'We are at the front end of the cutting edge in terms of change, not the hind end,' Chang said.

A fast pace

The Human Genome Project, the federal government?s 15-year effort to identify all the estimated 80,000 genes in human DNA?and the millions of variations in those genes?is running as much as two years ahead of its 2005 targeted completion date, Collins said. The government hopes that understanding individual genetic differences can lead to revolutionary ways to diagnose, treat and prevent thousands of biologically based disorders, including psychiatric diseases. But that knowledge leaves open many questions about how people will react emotionally when they know years in advance that they face the risk of fatal or debilitating illnesses.

The need for clinical psychologists? involvement in genetic testing is clear. Studies have already uncovered noteworthy emotional and behavioral responses that people show toward the whole concept of illness prediction, the speakers said. For example, people at risk for Huntington?s disease?a degenerative neurologic disorder?say in surveys that they want to take a genetic test to determine their susceptibility. But they rarely seek out those tests, researchers at John Hopkins University School of Medicine have found. When asked why they avoided the test, respondents indicate that they?re worried about their emotional reactions to the results, said Ann-Marie Codori, PhD, assistant professor in the university?s department of psychiatry and behavioral sciences. Indeed, those who test positive for the Huntingon?s gene face an increased risk for major depression, she added.

In a study recently submitted for publication, Robert Croyle, PhD, of the National Cancer Institute and the University of Utah, and his former colleagues at the University of Utah, found that women who test positive for the BRCA1 mutation?the genetic marker linked to breast-cancer risk?are not more likely to get regular mammograms than women who don?t carry the mutation. That finding challenges the notion that people are more likely to adhere to a stronger disease-screening regimen if they know they face a biological risk for the illness, he said.

Psychologists and other health-care providers may have to address a variety of family problems when they assist clients who have been tested for a genetic health risk. For example, they may need to counsel parents who can?t decide whether to tell their children that they may be genetically predisposed to a serious disease, said Andrea Farkas Patenaude, PhD, chair of the APA advisory council on genetic issues and director of psychology-oncology research in the Dana-Farber Cancer Institute?s pediatric oncology division. Or, a husband may feel anger toward his wife for carrying the 'bad gene' that led to their child?s cancer, she added.

Patenaude surmised that one of the most controversial family issues will involve duty to inform. Many patients who test positive for a genetic risk may not want to tell family members, even though such knowledge could allow those family members to take preventive measures to lower their risk of developing the disease in question, she said.

Health providers remain divided on the duty to inform, Patenaude said. The American Society of Human Genetics last year released a statement saying that doctors have the privilege of disclosing a patient?s genetic test results if other family members might face serious harm by not knowing about the risk or when those family members could take preventive measures to lower their risk. But the International Bioethics Committee of the United Nations Educational, Scientific and Cultural Organization holds that genetic-test information should remain completely confidential from third parties.

'The question is, are other family members third parties, or are they patients?' Patenaude asks.

Catching up

Medicine, nursing, psychology and a host of other health-related professions have much to learn about the genetic revolution, speakers warned. Even physicians lack adequate knowledge of the rising public awareness about genetics, they said.

'Don?t assume just because someone has an MD behind their name, that they know anything about genetics,' said Seymour Kessler, PhD, associate clinical professor at the University of California at San Francisco and former director of the genetic counseling program at the University of California at Berkeley. 'Some have as much trouble interpreting the genetics literature as the average lay person.'

But organized psychology has begun to beef up its knowledge about genetics research to provide appropriate services for people who undergo genetic testing, symposium speakers said. APA is a member of the National Coalition for Health Professional Education in Genetics (NCHPEG), an interdisciplinary group of 120 professional organizations?including the American Medical Association, the American Nurses Association and the Genome Institute. The group plans to develop a comprehensive, online genetics information center that will offer health providers easy-to-understand data on genetics research. NCHPEG also is devising a policy on core competencies in genetic curricula for various health-care disciplines, Collins added.