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.     

Attitudes toward genetic counseling and prenatal diagnosis among a group of individuals with physical disabilities

Few studies have been published on the attitudes of people with physical disabilities toward genetic counseling and prenatal diagnosis. Articles in the lay press and social science literature on this topic, mainly written by disability rights activists and advocates, imply opposition to prenatal diagnosis and the field of clinical genetics by the physically disabled population. In this study, 15 adults with physical disabilities were interviewed regarding their attitudes toward genetic counseling and prenatal diagnosis. Genetic counseling and prenatal diagnosis were generally viewed favorably by this sample of the disability community. Only a small percentage of the sample perceived genetics to be eugenic. Implications for genetic counseling and future research are discussed.     

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.     

Suicide prevention in the genetic counseling context

Utilizing a case report, this paper explores psychosocial aspects of suicidal intent in a woman seeking prenatal diagnosis. Using knowledge and practice of appropriate assessment, referral, and intervention procedures, the therapy team of genetic counselor and psychotherapist facilitated successful identification and management of this potentially suicidal client. The main counseling goals for the genetic counselor are to assess the situation adequately, decrease the immediate danger, and, with supervision and/or consultation, stabilize the seriously suicidal person until that individual can be triaged to mental health or medical professionals for treatment. The prevalence of suicide issues in genetic counseling contexts is unknown and reports mentioning suicidal ideation unusual in the genetic counseling literature. Is this reported case a rarity among genetic counseling referrals? Systematically collected information on the prevalence and resolution of suicidal issues in genetic counseling contexts would be helpful for those setting curricula for genetic counseling training programs, standards for professional certification exams, and policy and procedures manuals for clinical units.     

Genetic counseling after abnormal prenatal diagnosis: Facilitating coping in families who continue their pregnancies

Families continuing a pregnancy after abnormal prenatal diagnosis face a unique crisis. Case examples are combined with clinical observations and a review of selected literature to define the elements of this crisis. Counseling strategies are discussed that may facilitate coping. Further research is needed to define the experience, as well as to identify effective coping strategies and successful counseling approaches.     

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.     

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.     

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.     

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.     

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.     

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.     

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).     

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.     

Fabry disease in genetic counseling practice: recommendations of the National Society of Genetic Counselors

The objective of this document is to provide health care professionals with recommendations for genetic counseling and testing of individuals with a suspected or confirmed diagnosis of Fabry disease, with a family history of Fabry disease, and those identified as female carriers of Fabry disease. These recommendations are the opinions of a multicenter working group of genetic counselors, medical geneticists, and other health professionals with expertise in Fabry disease counseling, as well as an individual with Fabry disease who is a founder of a Fabry disease patient advocacy group in the United States. The recommendations are U.S. Preventive Task Force Class III, and they are based on clinical experience, a review of pertinent English-language articles, and reports of expert committees. This document reviews the genetics of Fabry disease, the indications for genetic testing and interpretation of results, psychosocial considerations, and references for professional and patient resources. These recommendations should not be construed as dictating an exclusive course of management, nor does use of such recommendations guarantee a particular outcome. The professional judgment of a healthcare provider, familiar with the facts and circumstances of a specific case, will always supersede these recommendations.