Complexities in Cancer Risk Counseling: Presentation of Three Cases

Complexities abound in the identification and management of families at increased risk for inherited forms of cancer. One of the ways to learn as a profession how best to provide cancer risk counseling (CRC) is to share counseling experiences. Such cases can provide insight into the issues raised by families and ways in which genetic counselors have handled complex situations. Here we describe three CRC cases initially presented at the 1995 American College of Medical Genetics meeting. The first case involves balancing the importance of informing a family of the presence of an inherited cancer syndrome with the family's right not to know. The second case illustrates the difficulties in assisting an individual to make medical management decisions in the face of uncertain risk information. The third case describes the complex interactions with a woman before and after her decision to have prophylactic surgery. (affiliated with Long Beach Memorial Breast Center at the time of counseling)     

Cancer Risk Counseling: How Is It Different?

Fifty-six of 80 (70%) full members of the National Society of Genetic Counselors with interest in cancer genetics responded to a 1994 survey regarding their cancer risk counseling practices. This study was undertaken to describe cancer risk counselors and the services they provide and to identify possible differences from general genetic counseling that warrant further study. Of 56 respondents, 41 (75%) were providing CRC. The components of CRC programs are described. Our results found significant differences between CRC and general genetic counseling in terms of training and experience of genetic counselors providing CRC and length and number of counseling sessions per consultand. 51% of respondents had 1–2 years of working in CRC, compared to 17% with 1–2 years experience in genetic counseling (p<0.05). Over one-third had 10 or more years genetic counseling experience. Counselors were more likely to see individuals at risk for cancer for longer counseling sessions (p<0.05) and for additional sessions (p<0.05).     

Psychological Aspects of Genetic Counseling. IX. Teaching and Counseling

The goals, philosophies, and procedures of the teaching and counseling approaches to genetic counseling are differentiated and compared. The teaching approach, inherited from academic practitioners earlier in this century, appears to remain the dominant form of contemporary practice. With the introduction of more nonphysician professionals, attempts are being made to combine a teaching model with counseling procedures. The goals of the two models are conspicuously different; one attempts to end up with an educated counselee whereas the other hopes to leave the latter psychologically more autonomous and functional. Both models have strengths and limitations. The teaching model is essentially a form of health education, not counseling, and, with some exceptions, tends to fulfill its goals. The strategy of teaching, however, tends to undermine the psychological self-directedness of counselees and thus interferes with the processes they need to draw on to make autonomous decisions. The strength of the counseling model is in helping counselees reach decisions and deal with the personal meaning of information. However, applying this model makes huge demands on the professional. Greater attention needs to be given by training programs to the pedagogical and counseling skills genetic counselors may need in their professional work.     

The Familial Cancer Program of the Vermont Cancer Center: Development of a Cancer Genetics Program in a Rural Area

In response to many scientific discoveries linking cancer in certain families to inherited factors, the Vermont Cancer Center established the Familial Cancer Program (FCP) in December 1993. This multifaceted program combines the expertise of clinicians and researchers in many disciplines, including genetics, oncology, psychology, and molecular biology. The program's goals are identification of families in its region with excess cancer, provision of clinical services to such families, and use of research protocols when available and appropriate. This article describes the experience of setting up a familial cancer program in a rural area and discusses both successes and challenges in such an endeavor.     

Nuance, Complexity, and Context: Qualitative Methods in Genetic Counseling Research

Because of its potential for capturing complexity and process and its focus on communicating the meaning in human action, qualitative research is rapidly gaining acceptance in a wide variety of disciplines. Various qualitative approaches to research support its potential usefulness in genetic counseling research. Formulation of research questions and selection of appropriate qualitative methods are the first step. Interviewing, narrative analysis, focus groups, ethnography/participant observation, and participatory action research are only some of the most popular techniques that may be suitable in various situations. Processes of evaluation, analysis, and even ethical issues often differ somewhat from quantitative research. This article discusses these issues and the potential value of qualitative methods for research related to genetic counseling.     

Experiential Tasks and Therapist Bias Awareness

All therapists have values, assumptions, and beliefs about groups of people who are different from the dominant culture. How the therapeutic process is shadowed by therapists' assumptions and attitudes toward ethnic minorities is discussed. The author provides experiential techniques such as visualization, role playing, role reversal, family sculpturing, and a written assignment as a vehicle to heighten a family therapists' awareness of underlying assumptions and biases toward clients of an ethnic minority.     

Family Therapy with English Caribbean Immigrant Families in the United States: Issues of Emigration, Immigration, Culture, and Race

Many English Caribbean families in the United States are referred for therapy because of difficulties related to their adaptation to a new country/culture. This paper focuses on the intra-familial, and the family-larger system transitional/adjustment difficulties experienced by these families and presents issues specific to therapy with them. Effective therapy with English Caribbean families and their subsystems requires that therapists communicate to these families an understanding of their concerns, be knowledgeable about heterogeneity in cultural values and traditions, and create a therapeutic atmosphere in which families can feel valued and respected. Recommendations for therapists are presented and discussed.     

A Postmodern Analysis of a Course on Clinical Supervision

A qualitative study of a supervision course included pre-and post-interviews of the participants in addition to in-class participant observation. In an effort to be consistent with a postmodern perspective, the data were reviewed by the four members of the research team, each of whom shares his or her analysis, or story. Common themes which emerged in response to the focus on student change include greater awareness of isomorphic processes, ethical and legal issues, and evaluative processes.     

Homeless women and their families: Characteristics,life circumstances,and needs

This study investigated the needs of a sample of 100 women from shelters for the homeless in Richmond, Virginia. The women's responses to a 117-item interview were used to obtain information regarding their domicilary status, work history, educational background, family and health history, social support, reasons for homelessness, and social service needs. The results indicated that a significant number of the women had moved as many as six times within the past five years for various reasons, including domestic violence, interpersonal conflict, overcrowding, and eviction. Many women were high school graduates and had job skills in the health care, educational, and clerical fields. Most women were raised by their natural or extended family and the majority of them had a friend or family member who provided social support. Identified needs included housing, food, clothing, and transportation. The needs of homeless women and their children were different from the needs of the homeless chronically mentally ill and require specialized services as well as an increase in the available number of low-income housing units.     

Ethical principles and cultural integrity in health care delivery: Asian ethnocultural perspectives in genetic services

The tradition of Western thought is not always ubiquitous when working within the context of different ethnocultural populations, particularly that of Asian culture, and often poses ethical quandaries for health care professionals engaged in genetic services. For example, understanding the Asian ethnocultural perspective of patient autonomy, informed consent, and nondirective counseling from the Western perspective may be inappropriate and compromise cultural integrity and the delivery of effective genetic services because: (1) A distinction exists between the role of Asian (collective) autonomy vs. Western (individual) autonomy in the decision-making process. (2) The medical model is complementary to Asian expectations and respect of authority and may result in an uninformed consent to genetic professional's recommendations. (3) Misinterpretations of the normative decision-making process, misconceptions of normalcy, and the limits of tolerance of nondirective counseling may result in less effective treatment and compliance. Therefore, we suggest that acknowledging the impact of ethnicity and culture on ethical principles as applied in genetic services is essential in the assessment and delivery of ethically and culturally appropriate health care.