Client Perceptions of the Impact of Genetic Counseling: An Exploratory Study

Twenty-eight former genetic counseling clients seen at a major Midwestern university were recruited to be interviewed about their genetic counseling experiences, including most and least helpful aspects, what they learned, how this information impacted their decision-making, and their perceptions of their genetic counselors' behaviors. Responses were inductively analyzed, and several themes were identified, including: Clients sought genetic counseling to obtain genetic-medical information; a majority accurately recalled this information; genetic counseling influenced decisions for about 50% of the sample; decision-making was affected by several extra-session factors; a majority experienced distress during the session; most perceived genetic counselor responses as nondirective and liked this approach; counselor behaviors regarded as directive involved discussion of pregnancy termination; participants disagreed about the need for and provision of genetic counselor support; most regarded the session as helpful and stated that they would seek genetic counseling again. Suggestions for addressing these issues in practice and research are given.     

Elucidating Genetic Counseling Outcomes from the Perspective of Genetic Counselors

Outcomes in the field of genetic counseling have not been well-defined or categorized, despite pressures to provide evidence-based measures in all areas of healthcare. This study describes a process to elucidate and categorize a wide-ranging set of outcomes as characterized by diverse groups of practicing genetic counselors. Semi-structured focus groups were conducted at the National Society of Genetic Counselors 2013 NSGC Annual Education Conference during an educational breakout session. A general inductive qualitative research approach was utilized to code focus group notes, categorize them into themes, and compare them across specialty groups. A total of 107 individuals participated in 14 focus groups, consisting of specialists in cancer (n = 20), general genetics (n = 40), prenatal genetics (n = 11), and “other” (n = 36). Of the twelve genetic counseling outcomes themes identified, the most common across focus groups included: 1) appropriateness of testing and accuracy of results interpretation; 2) psychosocial outcomes; 3) adherence to or receipt of appropriate medical management; and 4) patient and provider knowledge. Data assessed by specialty demonstrated similarities in outcomes themes, suggesting that a common set of genetic counseling outcomes would likely be appropriate to cover the majority of needs for the profession. Results can serve as a platform from which to build a more well-defined and comprehensive set of outcomes.     

Genetic Counseling: A Transnational Perspective

Although the basic goal and components of genetic counseling appears to be the same across the globe, judged by my experiences there are significant differences in the provision of genetic counseling services in Australasia (Australia and New Zealand) and India. There is poor recognition of the professional status of a genetic counselor in India at present. This may be partly because genetic counseling itself is a relatively new discipline within the medical field in India, although some types of genetic services and research have been conducted since 1960s. In this paper, I aim to provide insight from my personal transnational experiences.     

Insufficient Referral for Genetic Counseling in the Management of Hereditary Haemochromatosis in Portugal: A Study of Perceptions of Health Professionals Requesting HFE Genotyping

There is a general consensus that HFE- related Hereditary Haemochromatosis (HFE-HH) should be diagnosed at early stages in pre-symptomatic individuals, in order to prevent the most severe consequences of iron overload. In Portugal, despite an increasing number of requests for genetic diagnosis of this rare disease, there is not a corresponding increase in requests for genetic counselling. The objective of the present study was to evaluate physicians’ main motivations for requesting HFE genotyping or genetic counselling for HFE-HH. We assessed current medical practices regarding family testing and diagnosis and discuss whether these can be improved in order to increase the effectiveness of disease prevention. Our results show there is a general lack of knowledge about the selection of patient cases that should be sent for genetic counseling or for molecular testing of HFE-HH by physicians (especially by general practitioners). The lack of family-based screening may indirectly compromise the efficiency of disease prevention in terms of early diagnosis and treatment. We concluded it is necessary to circulate more information about Hereditary Haemochromatosis among health professionals in order to improve strategies for its early diagnosis.     

Parents' Experiences with Genetic Counseling After the Birth of a Baby with a Genetic Disorder: An Exploratory Study

Little is known about factors determining which families utilize genetic counseling services. We conducted semistructured interviews with parents of four children born with cystic fibrosis (CF) and ten with Down's syndrome (DS) to ascertain reasons for using, or not using, genetic counseling services in the state of Victoria, Australia. We also explored the usefulness of genetic counseling for the families who had experienced it, and the perceived role of genetic counseling. All mothers of children with CF see a genetic counselor as part of a structured education program following diagnosis through newborn screening. Information overload was identified by them as an important problem. There is no specific program for families of children with DS. Six of them had received genetic counseling and four had not, either because it was not specifically offered to them or because they did not pursue it in the context of misconceptions about its purpose. The timing of the offer of genetic counseling is important and needs to take into account parents' coping strategies after diagnosis. Several parents commented on the favorable aspects of counseling, including getting information they needed to deal with the diagnosis and relief of guilt. Better awareness of genetic counseling by referring physicians, and providing counseling at more than one visit, may contribute to a more effective service.     

Last Words: Analysis of Suicide Notes from an RECBT Perspective: An Exploratory Study

A sample of 86 suicide notes was analyzed to identify the common cognitive and emotional themes contained in the text from a rational-emotive and cognitive behavior therapy (RECBT) perspective. Using grounded theory and statistical analysis to examine the data, this study found that the most frequent emotional categories to be present in these suicide notes are autonomous depression, sociotropic depression, guilt, shame, hurt and anger. It was also discovered that men, more than women, are likely to write about their experience of guilt in their suicide notes at the end of a relationship, while women are more likely to express feelings of hurt. This study may enable RECBT practitioners to better understand the cognitive and emotional factors of suicide behavior, and it may encourage future research into more specific suicide prevention protocols.     

Development of the Critical Elements of Genetic Evaluation and Genetic Counseling for Genetic Professionals and Perinatologists in Washington State

We present a method for the development of consensus documents describing the components of genetic evaluation and genetic counseling for various diagnoses. These documents were developed to encourage consistency among genetic professionals in Washington State. Other possible uses of these documents are to provide information regarding genetic evaluations for health care practitioners and payers, and to assist in quality assurance and genetic training programs. A working group of six genetic professionals developed two templates for the critical elements of genetic evaluation and genetic counseling, for clinical (nonprenatal) and prenatal patients. The working group then completed prototype templates for several specific genetic disorders. The templates and prototypes were sent to interested genetic professionals and perinatologists who submitted a total of 76 draft critical elements (CE's) to the working group. At two statewide meetings, participating practitioners modified and unanimously approved the CE templates, then unanimously approved the 21 draft CEs that had been finalized in small group discussions. Approved CE's were distributed to genetic professionals and perinatologists within the state.     

Qualitative Cancer Genetic Counseling Research, Part II: Findings from a Exploratory Ethnographic Study in a Cancer Clinic

This is a report of the preliminary findings of a brief exploratory ethnographic study in a cancer diagnosis and treatment clinic. The main research purpose was to explore the meaning of cancer and cancer treatment to patients themselves and to their relatives and close friends. The methods are described in detail in a paper focusing on the experiences of being a novice ethnographer (Peters et al. (2001) J Genet Counsel 10(2):133–150.). The preliminary results of this exploratory fieldwork indicate that the experience of attending a cancer treatment clinic for evaluation and/or treatment is a complex social, emotional as well as medical process for patients and families. Themes with relevance to genetic counselors that emerged from this early observation period included ideas about causes of cancer, the complex nature of families and kinship, coping and support, use of food, and healing. These initial findings have implications for genetic counseling practice and hopefully will stimulate more qualitative social and behavioral research in cancer genetic counseling.     

Counseling as an Interpersonal Influence Process: A Perspective for Counseling Practice

J. D. Corrigan, D. M. Dell, K. N. Lewis, & L. D. Schmidt. Counseling as a social influence process: A review. Journal of Counseling Psychology, 1980, 27, 395–441 (Monograph).     

Genetic Counseling Assistants: an Integral Piece of the Evolving Genetic Counseling Service Delivery Model

This study explores the potential impact of the genetic counseling assistant (GCA) position on the efficiency of the genetic counseling field, evaluates attitudes regarding expansion of the genetic counseling field to include the GCA, and presents data on GCA endeavors and GCA job tasks as reported by GCAs, certified genetic counselors (CGCs), and program directors (PDs). Data on GCA roles and attitudes toward different aspects of the GCA position were collected via surveys of CGCs who have worked with GCAs, PDs who have and have not had experience with GCAs in their programs, and GCAs. We analyzed responses from 63 individuals: 27 PDs, 22 CGCs, and 14 GCAs. GCAs’ impact on efficiency was calculated via internal analysis of genetic patient volume per genetic counselor within the University of Texas Southwestern (UTSW) patient database prior to, and since the addition of, a GCA to the practice. The response rates for PDs, CGCs, and GCAs were 27 %, 79 %, and 61 %, respectively. Every CGC stated the GCA increased their efficiency. CGCs with a GCA reported a 60 % average increase in patient volume. This figure was congruent with internal data from the UTSW cancer genetics program (58.5 % increase). Appropriate responsibilities for GCAs as reported by CGCs and PDs (>90 %) include: data entry, shipping tests, administrative tasks, research, and ordering supplies. Regarding GCAs delivering test results, there was response variation whether this should be a job duty: 42 % of CGCs agreed to GCAs delivering negative results to patients, compared to 22 % of program directors. Twenty-two percent of PDs expressed concern about the job title “Genetic Counseling Assistant.” Ninety percent of CGCs felt that GCA was a career path to becoming a CGC, compared to 42 % of PDs. Eighty-three percent of GCAs who decided to apply to CGC graduate programs were accepted. We conclude the addition of a GCA to a genetic counseling practice contributes to increased efficiency and is one way to expand the reach of the profession.     

Assessment of the Use and Feasibility of Video to Supplement the Genetic Counseling Process: A Cancer Genetic Counseling Perspective

Cancer genetic counselors use a variety of teaching modalities for patient education. This survey of cancer genetic counselors assessed their use of educational videos and their recommendations for content of future videos. Thirty percent of respondents use videos for patient education. Cited benefits included reinforcement of information for clients and increased counselor efficiency. Of the 70% who do not use videos, predominant barriers included the perceived lack of an appropriate video, lack of space and/or equipment, and concern that videos are impersonal. Most respondents desired a video that is representative of the genetic counseling session, but emphasized the importance of using broad information. Content considered critical included the pros and cons of genetic testing, associated psychosocial implications, and genetic discrimination. The results of this exploratory study provide data relevant for the development of a cancer genetics video for patient education, and suggestions are made based on aspects of information processing and communication theories.     

Genetic Counselors' Experiences with Paternal Involvement in Prenatal Genetic Counseling Sessions: An Exploratory Investigation

Limited research exists concerning male partners' participation in prenatal genetic counseling (R. Kenen, A. C. M. Smith, C. Watkins, & C. Zuber-Pitore, J. Genet Corns 9, 33–45, 2000). To further understand paternal participation, we interviewed 17 experienced prenatal genetic counselors to assess their perspectives on this issue. We investigated 6 research questions: 1) How do genetic counselors define paternal involvement, 2) how do they determine and address problematic involvement, 3) what factors influence involvement, 4) was paternal involvement addressed in training, 5) how might training be improved, and 6) how do participant strategies for addressing involvement compare to those of marriage/family therapists? Qualitative analysis revealed that 1) participants regard paternal involvement asimportant; 2) most address problematic involvement with strategies similar to those of marital/family therapists; 3) influential factors include male partner's characteristics, the couple's relationship (including culturalpractices), and pregnancy factors; and 4) participants received little or notraining on paternal involvement and recommended didactic and experientialactivities. Implications and research recommendations are presented.     

Prejudice and the function of attitudes relating to Muslim Australians and Indigenous Australians

The aim of the present study was to examine prejudice against Muslim Australians and Indigenous Australians and the function of those attitudes using previously identified functions, direct experiential–schematic and value expressive, and including a new indirect experiential–schematic function. Respondents were categorised into two groups: accepting and rejecting. For the Muslim data there was no difference between accepting and rejecting groups regarding the value‐expressive function, but acceptors reported the experiential–schematic function to a greater extent than did rejectors. For the Indigenous data there was no difference between groups on the value‐expressive or the experiential–schematic function. With both target groups, rejectors reported the indirect experiential–schematic function more than acceptors. The value‐expressive function was higher for the Muslim data and the experiential–schematic function was higher for the Indigenous data. The importance of taking into account the function of respondents' attitudes, the distinction between source and function of attitudes, as well as specific issues surrounding target groups themselves, is discussed.     

Grounded Theory in Genetic Counseling Research: An Interpretive Perspective

As qualitative inquiry has gained wider acceptance in genetic counseling research, it has become increasingly important for researchers and those who evaluate their work to recognize the diversity of methods that fall under this broad umbrella. Some of these methods adhere to the traditional conventions of scientific research (e.g., objectivity, reliability, validity, replicability, causality and generalizability). When such studies are evaluated by reviewers who are well versed in scientific methods, the rigor of the study may be readily apparent. However, when researchers are using methods that do not conform to traditional scientific conventions, the distinction between well conducted and poorly conducted studies may become more difficult to discern. This article focuses on grounded theory because it is a widely used qualitative method. We highlight key components of this method in order to contrast conventions that fall within a scientific paradigm to those that fall within an interpretivist paradigm. The intent is to illustrate how the conventions within these two different paradigms yield different types of knowledge claims—both of which can advance genetic counseling theory and practice.     

Genetic Counselling for Psychiatric Disorders: Accounts of Psychiatric Health Professionals in the United Kingdom

Genetic counselling is not routinely offered for psychiatric disorders in the United Kingdom through NHS regional clinical genetics departments. However, recent genomic advances, confirming a genetic contribution to mental illness, are anticipated to increase demand for psychiatric genetic counselling. This is the first study of its kind to employ qualitative methods of research to explore accounts of psychiatric health professionals regarding the prospects for genetic counselling services within clinical psychiatry in the UK. Data were collected from 32 questionnaire participants, and 9 subsequent interviewees. Data analysis revealed that although participants had not encountered patients explicitly demanding psychiatric genetic counselling, psychiatric health professionals believe that such a service would be useful and desirable. Genomic advances may have significant implications for genetic counselling in clinical psychiatry even if these discoveries do not lead to genetic testing. Psychiatric health professionals describe clinical genetics as a skilled profession capable of combining complex risk communication with much needed psychosocial support. However, participants noted barriers to the implementation of psychiatric genetic counselling services including, but not limited to, the complexities of uncertainty in psychiatric diagnoses, patient engagement and ethical concerns regarding limited capacity.     

Influence of Familial Spirituality: Implications for School Counseling Professionals

This article (a) addresses the importance of familial spirituality on students' holistic development; (b) explores professional ethical codes, standards, and counseling competencies relating to students' familial spirituality; (c) introduces educational activities to assist school counselors in increasing their understanding and appreciation of the influence of familial spirituality on students' behavior; (d) reviews a case study of a counselor integrating the suggested strategies in support of students and families; and (e) provides implications for professional school counseling.     

Perceived Multicultural Counseling Competence of Malaysian Counselors: An Exploratory Study

This study investigated the nature and extent of perceived multicultural counseling competence (MCC) of 508 professional counselors in Malaysia using a national survey approach. Differences in counselors' perceived MCC pertaining to gender, ethnicity, highest education, and multicultural training were examined. Results revealed 5 factors as constituents of MCC and significant differences in perceived MCCs due to ethnicity, highest education, and participation in multicultural training. Implications for future research, counselor education, and counseling practice are discussed. Este estudio investigó la naturaleza y la extensión de la competencia en consejería multicultural (MCC, por sus siglas en inglés) percibida de 508 consejeros profesionales en Malasia usando un enfoque de encuesta nacional. Se examinaron las diferencias en la MCC percibida de los consejeros respecto a sexo, etnicidad, nivel máximo de educación y capacitación multicultural. Los resultados revelaron 5 factores constituyentes de MCC y diferencias significativas en las MCC debido a etnicidad, nivel máximo de educación y participación en capacitación multicultural. Se discuten las implicaciones para investigaciones futuras, educación de consejeros y práctica de la consejería.     

Attitudes toward Indigenous Australians: the role of empathy and guilt

Previous research in Perth, Western Australia, finds a disturbing amount of prejudice against Indigenous Australians. At the forefront of much prejudice research has been the distinction between old‐fashioned and modern prejudice. We constructed an Attitude Toward Indigenous Australians scale from items originating from qualitative data. We found that negative attitudes were predicted by collective guilt about past and present wrongs to Indigenous Australians (collective guilt directly linked to Indigenous issues, as well as collective guilt generally). Negative attitudes were also predicted by a lack of empathy for Indigenous Australians, and affective perspective taking generally. Socio‐demographics (e.g. a lack of education) predicted negative attitudes, which indicate the necessity of taking both social‐psychological and socio‐demographic factors into account when examining the nature of prejudice. A number of practical implications arise from these findings. Copyright © 2004 John Wiley & Sons, Ltd.     

Consideration of Genetic Counseling as a Career: Implications for Diversifying the Genetic Counseling Field

Under-representation of racial/ethnic minority counselors has been an ongoing issue in the genetic counseling field. A better understanding of genetic counseling awareness and career consideration may help to increase the number of applicants to genetic counseling training programs from racial/ethnic minorities. This study sampled high school and college students (n = 233) to examine their awareness and perceptions of genetic counseling. Ethnicity, gender, parental level of education, and interest in biology were significant predictors of a subjects genetic counseling awareness; previous awareness of genetic counseling, interest in psychology, and level of education were significant predictors of whether a subject would consider genetic counseling as a career. The findings suggest that knowledge of genetic counseling is lower among racial/ethnic minorities, but that racial/ethnic minorities are just as likely to consider genetic counseling as a career. Awareness of genetic counseling prior to university education may increase racial/ethnic minority representation among potential applicants to genetic counseling training programs.