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Genetic counseling: implications for community counselors.

Article Excerpt
The current rapid advances in decoding and understanding the human ,genome have profound implications for people's health and quality of life. With the advances in medical knowledge and technology come challenges for individuals facing decisions about their own genetic information. Genetic testing can assist individuals in planning for a pregnancy, in understanding the risk when a family history of a genetic disorder is present, and in managing personal health decisions. Assisting these individuals before, throughout, and after the process of genetic testing is the role of genetic counselors, who make up a relatively new (30-year-old) specialty that crosses the boundaries of medicine and counseling. There is also a role for community-based counselors in supporting individuals before or after the genetic testing and in working together with specialized genetic counselors as referral sources.

A recent issue of the Journal of Health Psychology (Vol. 7, No. 2, 2002) contained a series of qualitative studies involving patients at regional genetic centers in the United Kingdom. The articles presented rich descriptions of the struggles and challenges clients and counselors face in making decisions related to genetic testing and in coping with the implications of those decisions. Each of the researchers for the articles used an interpretive phenomenological analysis (IPA) method to examine the interviews with the clients, positing that IPA is especially focused on what a participant thinks or believes about the topic at hand. As such, the researchers contended that IPA is particularly useful in examining the dilemmas associated with genetic testing and the process by which people approach these issues (Chapman & Smith, 2002). One of the strengths of qualitative research is the use of the voice of the participants and the rich descriptions this can afford. Unfortunately, because space limitations restrict this review to the findings and discussion of these studies, much of that participant voice is lost. We selected five articles from this special issue for review because they seemed to represent the breadth of the challenges facing patients, and we highlighted some of the unique implications for counselors working with issues related to genetic testing.

The majority of clients who are referred by medical personnel to genetic counselors are referred to discuss reproductive issues, although genetic counseling for pediatric and adult onset disorders is expanding (K. Connerton-Moyer, personal communication, September 25, 2002). Two of the articles in the special issue dealt with studies of this process. The other three articles reviewed focused on the decision-making process, perceptions of what makes genetic counseling effective, and social and ethical considerations associated with genetic counseling.

REVIEW OF SPECIAL ISSUE ARTICLES

Female Carriers of X-linked Conditions

The first article we reviewed (Kay & Kingston, 2002) contained a report on the feelings of women who were carriers of X-linked conditions. X-linked genetic conditions are caused by a defective gene on an X chromosome and, as such, most often affect males who do not have another X chromosome to compensate. Individuals who carry an X-linked condition have a 1 in 4 chance of having a son with that X-linked condition or a 1 in 4 chance of having a daughter who is a carrier of the condition. Some X-linked conditions are not lethal, and many are not even serious (i.e., red-green color blindness). Others, however, are particularly important issues in reproductive planning because some syndromes associated with X-linked genetic malformations are progressively disabling, and many lead to death in childhood or early adulthood. This study focused on the attitudes toward having children among women who were carriers for X-linked conditions and examined the role personal experience (i.e., a family member with an X-linked condition) played in the decision-making process. Fourteen women participated in the interviews, 8 of whom had at least one brother who had been affected by an X-linked condition.

Women...

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