Nondirectiveness and genetic counseling

Nondirectiveness is the generally required and professed standard for genetic counseling. However, studies are lacking in the field of human genetics and in other disciplines which address either the theory or practice of this type of therapeutic procedure in the context of genetic counseling. Moreover, there is no indication the further development this concept has undergone in client-centered therapy has been acknowledged in human genetics. This could be due tot he historical development of genetic counseling, its inherent conflicts and often undefined goals, and the latent need of human geneticists to defend themselves against being accused of eugenic tendencies. Nondirectiveness and directiveness, however, can neither adequately describe what takes place in genetic counseling, nor can they — according to their original meaning — be used to define an ethical standard of genetic counseling. Starting with the writings by Carl Rogers (1942), an experiential approach is described, in which counseling is seen as a process of influence, which is wished by all the persons involved, during which activities are oriented toward the experience of the client, and which allows the counselor to communicate openly and directly with the client. The present study illustrates the use of the experiential approach in genetic counseling and shows that it can uphold the principle of ethics, which nondirectiveness demands and, at the same time, prevent the inevitable and unresolvable contradictions. This means that in their training genetic counselors must learn to recognize and constantly reflect on the influence they can and want to exert. In order to be able to use this influence in a responsible manner, genetic counselors must also learn to have a certain degree of flexibility so that they are able to check at any time how their client responds to this influence.     

Practice variability in prenatal genetic counseling

This study demonstrated that the content of prenatal genetic counseling sessions varied from counselor to counselor and from center to center. The study was designed to examine which specific issues were included by genetic counselors in prenatal genetic counseling sessions, and to determine which factors led genetic counselors to include or exclude this information from such sessions. Data were collected by randomly surveying 200 full, master degree members of the National Society of Genetic Counselors (NSGC). Respondents provided information by deciding which of 45 specific issues they would include in a standard prenatal genetic counseling session, and which one factor from a bank of 11 factors most accurately described the reason for this decision. The results indicated that the issues included/excluded from sessions varied widely among genetic counselors. The results also indicated that Patient Education/Informed Decision Making (34.5%) played the largest role in decision making overall, with Standard at Center/Departmental Policy (17.6%), Personal Experience/Preference (12.4%), and Applicability (10.9%) serving as the next three most important reasons for including or excluding issues from prenatal genetic counseling sessions.     

Minority recruitment into the genetic counseling profession

In the past, genetic counseling training programs have had an abundance of applicants for the number of slots available. They have, however, had a very limited pool of minority applicants. At the June 1992 meeting of the genetic counseling training programs directors the topic of minority recruitment was explored. The resources and recommendations that resulted from this discussion can be used by other medical training programs.     

Resistance and adherence to the norms of genetic counseling

Genetic counseling for women of advanced maternal age who are considering prenatal testing continues to be based on a principle of nondirectiveness. We interviewed 11 genetic counseling students and four counselors about how they experience and manage, in practice, the tensions between the ideology of nondirectiveness and the acknowledged reality that one can never be truly nondirective. We found that our respondents creatively resolve this tension—simultaneously resisting and adhering to the values of nondirectiveness and information-giving—in individual and situation-specific ways. This resolution is facilitated by the extent to which information given to counselees is fluid, mobile and context-dependent, but these very features of information also have critical implications for both the norms and the practice of genetic counseling.     

Models of genetic counseling and their effects on multicultural genetic counseling

This theoretical paper examines challenges to multicultural genetic counseling, counseling between culturally different clients and counselors, in the context of Kessler's typology of models of genetic counseling (Kessler S (1997) J Genet Counsel 6:287–295). It is suggested that challenges such as resistance to multicultural genetic counseling education may be due to conceptions about genetic counseling as a biomedical field that transcends questions of culture as well as lack of multicultural training or prejudice. Directions for future research and recommendations for multicultural genetic counseling education are briefly explored.     

Cultural competency in genetic counseling

Incorporating a cross-cultural curriculum into genetic counseling training programs demonstrates a professional conviction of genetic counselors that cultural issues are important in genetic counseling. Funded by the Special Projects Fund in 1993 from the National Society of Genetic Counselors and the Kitson Fund from the Department of Social, Organizational, and Counseling Psychology, Teachers College, Columbia University, theHandbook of Cross-Cultural Genetic Counseling was developed to provide genetic counseling programs a curriculum to teach cross-cultural genetic counseling. The theoretical rationale for the development of a cultural curriculum is presented. By expanding cultural knowledge, developing an awareness of oneself and others, and increasing the repertoire of culturally relevant counseling skills within a socio-political context, genetic counselors will be able to better serve all clients seeking genetic counseling.     

Psychological aspects of genetic counseling. VII. Thoughts on directiveness

Directiveness and nondirectiveness in genetic counseling are poorly understood on the operational level, and information about what counselors allege they do and what actually is done in practice is lacking. Although they are often thought of as diametrically opposite approaches, when viewed as strategies of persuasion, their similarities become more apparent. Directive counselors attempt to influence the counselee's behavior, whereas nondirective ones attempt to influence the latter's thinking processes; there is need for both approaches. Directiveness may also sometimes occur because of inadequate interview skills. The case made for directiveness is discussed and critiqued, available research is reviewed, and suggestions for future studies are advanced.     

An assessment of teratology training provided by masters level genetic counseling programs

The increasing demand in the clinical genetics setting for information about teratogen exposures has created a need for genetic counselors to have the capabilities to appropriately address patient concerns. In order to assess how training in teratogen counseling is currently being conducted, the GLaRGG Teratogen Subcommittee surveyed all 17 genetic counseling training programs in North America in September 1993. Information was obtained from training programs about coursework, resources, and clinical training. In addition, each training program was asked to provide information about how their teratogen training needs could better be met. While all programs responded that some information in their coursework applicable to teratogen counseling was provided, there was wide variation in the amount of time devoted to this topic. The programs also greatly differed in the provision of clinical training in teratogen counseling. For both coursework and clinical work, genetic counselors were the main trainers in teratogen counseling. In spite of this, fewer than 25% of training programs have a defined teratogen clinical rotation. Data from the survey are discussed and recommendations presented.     

Psychological aspects of genetic counseling. VIII. Suffering and countertransference

Two common forms of countertransferential problems seen in genetic counseling, associative and projective, are described and illustrated. Both forms have the potential of reducing the quality of empathy counselors provide counselees. When counselors experience the same problems as the counselees they counsel it is virtually impossible to avoid facing countertransferential reactions which may not always promote the counselees' interests and/or redound to their benefit. Genetic counselors, like other personal counselors and psychotherapists, have a professional responsibility to be aware of, monitor, contain, and learn from their countertransferential experiences.     

Lay understanding of genetic disease: A British study of families attending a genetic counseling service

Although lay people know that various diseases can be inherited, the idea that unhealthy life styles are the crucial cause of ill health has been promoted by health education policy in the United Kingdom. However, a new paradigm seems to be developing. The medical profession is increasingly using genetics to explain ill health, and people are being referred to geneticists for information and counseling. Lay conceptions of genetic disease emerged during this qualitative study of the process of genetic counseling. The results reported in this paper suggest that many lay people lack knowledge of genetics and inheritance, and that there is considerable stigma attached to genetic disease. Misconceptions and fears may not always be recognized or resolved during the process of genetic counseling. The implications of such misunderstandings and beliefs are considered in this paper.     

Practice-based competencies for accreditation of and training in graduate programs in genetic counseling

In January 1996, the American Board of Genetic Counseling (ABGC) adopted 27 practice-based competencies as a standard for assessing the training of graduate students in genetic counseling. These competencies were identified and refined through a collective, narrative process that took place from January through November 1994, and included directors of graduate programs in genetic counseling, ABGC board members and expert consultants. These competencies now form the basis of the document Requirements for Graduate Programs in Genetic Counseling Seeking Accreditation by the American Board of Genetic Counseling (American Board of Genetic Counseling, 1996). The competencies are organized into four domains and are presented and discussed in this article.The Consortium includes Directors of established graduate programs in genetic counseling and members of the ABGC Board of Directors who participated in the Consensus Development Conference held in January, 1994: Diane Baker (University of Michigan/ABGC); Bonnie Baty (ABGC); Joan Burns (University of Wisconsin); Debra Collins (ABGC); Virginia Corson (ABGC); Beth Fine (Northwestern University/ABGC); Elizabeth Gettig (University of Pittsburgh); Verle Headings (Howard University); Jacqueline Hecht (University of Texas); Carl Huether (University of Cincinnati); Bonnie LeRoy (University of Minnesota); Joan Marks (Sarah Lawrence College); Anne Matthews (University of Colorado); Roberta Palmour (McGill University); Lorna Phelps (Medical College of Virginia); Kimberly Quaid (Indiana University); Joan Scott (ABGC); Ann Smith (ABGC); Helen Travers (ABGC); Judith Tsipis (Brandeis University); Ann Walker (University of California-Irvine/ABGC); Jon Weil (University of California-Berkeley); S. Robert Young (University of South Carolina); Randi Zinberg (Mount Sinai School of Medicine, New York).     

Emerging quality improvement measures in genetic counseling

The need to establish guidelines for total quality management in genetic counseling is now recognized as new genetic technologies are being introduced into genetics services and primary care. Genetic counselors have an important role in developing methods for assuring quality in the genetic counseling process. Emerging quality improvement measures as well as selected examples from the Quality Assurance Program in the Genetics Services Division at the Foundation for Blood Research are presented as examples of direct genetic counselor involvement. Suggestions for future directions of quality improvement activities for genetic counselors are discussed.     

A teaching framework for cross-cultural genetic counseling

The increasing diversity of American society has brought growing recognition of the need to bridge cultures in the delivery of genetic counseling services. New immigrants and members of diverse ethnic groups face multiple barriers to genetic counseling services. The need to train genetic counselors to deal with cultural diversity is especially crucial in the new genetic era, given the rapid expansion of available technology, with the resulting social and ethical ramifications. A framework for teaching cross-cultural issues in genetic counseling training programs is presented that can be implemented in step-wise fashion, consistent with available resources. Cross-cultural issues can be incorporated into existing teaching and training modalities by expanding the orientation from monocultural to multicultural. Relevant clinical experience, exploration of students' preconceptions and biases, reading materials, and lectures by invited speakers can all enhance students' knowledge and sensitivity. It is critically important that training programs furnish students with the basic tools necessary for the ongoing process of learning about cultural diversity.     

Phenotypic and genotypic heterogeneity in gaucher disease: Implications for genetic counseling

Genetic counseling for Gaucher disease is complicated by the vast degree of clinical heterogeneity encountered in the disorder. Recent advances in our understanding of the molecular genetics of Gaucher disease are particularly relevant to genetic counseling. Although the identification of mutations in the glucocerebrosidase gene has enabled genotypic screening of Gaucher patients, the ability to reliably predict patient outcome on the basis of DNA studies is often limited. An appreciation of both the spectrum of clinical manifestations in Gaucher patients and the limitations of the available genotypic information is necessary when counseling patients, families and at-risk individuals.     

Implications of human genome research: Impact on graduate education in genetic counseling

A conference of genetic counseling and clinical nurse specialist graduate program directors was hosted by the National Society of Genetic Counselors and funded by the Ethical, Legal, and Social Implications Program of the National Center for Human Genome Research in June 1992. One aspect of the conference addressed implications of the Human Genome Initiative for graduate education in genetic counseling. Within this paper, the topics of human variation and diversity, genetic discrimination, issues in non-directiveness, and genetic screening and policy development are reviewed and recommendations made for graduate curricula development and enhancement. In addition, suggestions are included for practicing genetic counselors.     

Perception of risk in genetic counseling

Abstract

Genetic counseling is a psychological process of communicating and perceiving information about risks. As such, it is important to assess how information is understood by counselees and how psychological factors affect risk perception. Subjects were 76 patients at a genetic clinic whose understanding of genetic counseling was assessed, along with their motivation and way of thinking about risks. Results indicated that subjective interpretations of recurrence risks are better predictors of their reproductive intentions than the “objective” risks. Also, specific cognitive and motivational factors appear to explain much of the variance in risk perception in genetic counseling. The results have important implications for how counseling is conducted, as well as for theoretical issues about cognitive processes.     

A case-based approach to the development of practice-based competencies for accreditation of and training in graduate programs in genetic counseling

The American Board of Genetic Counseling (ABGC) sponsored a consensus development conference with participation from directors of graduate programs in genetic counseling, board members, and expert consultants. Using a collective, narrative, and case-based approach, 27 competencies were identified as embedded in the practice of genetic counseling. These competencies were organized into four domains of skills: Communication; Critical Thinking; Interpersonal, Counseling, and Psychosocial Assessment; and Professional Ethics and Values. The adoption of a competency framework for accreditation has a variety of implications for curriculum design and implementation. We report here the process by which a set of practice-based genetic counseling competencies have been derived; and in an accompanying article, the competencies themselves are provided. We also discuss the application of the competencies to graduate program accreditation as well as some of the implications competency-based standards may have for education and the genetic counseling profession. These guidelines may also serve as a basis for the continuing education of practicing genetic counselors and a performance evaluation tool in the workplace.The Consortium includes Directors of established graduate programs in genetic counseling and members of the ABGC Board of Directors who participated in the Consensus Development Conference held in January 1994: Diane Baker (University of Michigan/ABGC); Bonnie Baty (ABGC); Joan Burns (University of Wisconsin); Debra Collins (ABGC); Virginia Corson (ABGC); Beth Fine (Northwestern University/ABGC); Elizabeth Gettig (University of Pittsburgh); Verle Headings (Howard University); Jacqueline Hecht (University of Texas); Carl Huether (University of Cincinnati); Bonnie LeRoy (University of Minnesota); Joan Marks (Sarah Lawrence College); Anne Matthews (University of Colorado); Roberta Palmour (McGill University); Lorna Phelps (Medical College of Virginia); Kimberly Quaid (Indiana University); Joan Scott (ABGC); Ann Smith (ABGC); Helen Travers (ABGC); Judith Tsipis (Brandeis University); Ann Walker (University of California-Irvine/ABGC); Jon Weil (University of California-Berkeley); S. Robert Young (University of South Carolina); Randi Zinberg (Mount Sinai School of Medicine, New York).     

Toward a new conceptualization and operationalization of risk perception within the genetic counseling domain

The purpose of this paper is twofold. First, it provides an historical overview of studies of risk, risk perception, and decision making under risk within the genetic counseling domain. Second, it proposes an alternative conceptualization and operationalization for the study of risk perception. The conceptualization involves probability, adversity, incompleteness, and ambiguity. Prior studies of risk perception focus on the recurrence risk and operationalize risk perception by asking for interpretations of the magnitude of the probability of the outcome. Their focus is on the probability of a particular outcome. We formulate the problem in terms of a gamble and suggest that risk perception be operationalized in terms of the riskiness of the gamble. Our focus is on the riskiness of a decision option which entails two or more outcomes.