Patients’ Attitudes Towards Disclosure of Genetic Test Results to Family Members: The Impact of Patients’ Sociodemographic Background and Counseling Experience

Many factors predict the intention to disclose genetic information to relatives. The article examines the impact of patients’ socio-demographic factors on their intention to disclose genetic testing results to their relatives. Data were collected in eight genetic clinics in Israel. Patients were requested to fill in a questionnaire after counseling. A convenience sample of 564 participants who visited these clinics was collected for a response rate of 85 %. Of them, 282 participants came for susceptibility testing for hereditary cancers (cancer group), and 282 for genetic screening tests (prenatal group). In the cancer group, being secular and having more years of education correlated positively with the intention to disclose test results to relatives. In the prenatal group, being married and female correlated positively with the intention to disclose. In the cancer group, being religious and with less years of education correlated positively with the view that the clinician should deliver the results to the family. In the prenatal group, being male and unmarried correlated positively with this belief. In both groups, being of young age correlated with the perception that genetic information is private. Varied sociodemographic factors affect the intention to inform family members. Thus, knowing the social background of patients will shed light on people’s attitudes to genetic information and will help clinicians provide effective counseling in discussions with patients about the implications of test results for relatives.     

Examining the Relationship Between Genetic Counselors’ Attitudes Toward Deaf People and the Genetic Counseling Session

Given the medical and cultural perspectives on deafness it is important to determine if genetic counselors’ attitudes toward deaf people can affect counseling sessions for deafness genes. One hundred fifty-eight genetic counselors recruited through the National Society of Genetic Counselors Listserv completed an online survey assessing attitudes toward deaf people and scenario-specific comfort levels discussing and offering genetic testing for deafness. Respondents with deaf/Deaf friends or who work in prenatal or pediatric settings had more positive attitudes toward deaf people than those without deaf/Deaf friends or those working in ‘other’ settings. More positive attitudes toward deaf people correlated with higher comfort level talking about genetic testing for the two scenarios involving culturally Deaf clients; and correlated with higher comfort level offering genetic testing to culturally Deaf clients wishing to have a deaf child. Attitudes and comfort level were not correlated in the scenarios involving hearing or non-culturally deaf clients. These results suggest that genetic counselors’ attitudes could affect information provision and the decision making process of culturally Deaf clients. Cultural sensitivity workshops in genetic counseling training programs that incorporate personal interactions with culturally Deaf individuals are recommended. Additional suggestions for fostering personal interactions are provided.     

Attitudes Towards Prenatal Genetic Counseling,Prenatal Genetic Testing,and Termination of Pregnancy among Southeast and East Asian Women in the United States

Recognizing the heterogeneity of the Asian population with regards to acculturation, education, health awareness, and cultural values is vital for tailoring culturally sensitive and appropriate care. Prior studies show that cultural values influence perceptions of genetics within Asian populations. The reputation of the family unit factors into decisions such as pregnancy termination and disclosure of family medical history, and the nondirective model of American genetic counseling may conflict with the historical Asian model of paternalistic health care. Previous studies also provide conflicting evidence regarding correlations between education, acculturation, age, and awareness and perceptions of genetic testing. The aims of this study were to describe attitudes towards prenatal genetics among Southeast and East Asian women living in the United States for varying amounts of time and to explore sociocultural factors influencing those attitudes. Twenty-three Asian women who were members of Asian cultural organizations in the United States were interviewed via telephone about their attitudes towards prenatal genetic counseling, prenatal genetic testing, and termination of pregnancy. Responses were transcribed and coded for common themes using a thematic analysis approach. Four major themes emerged. In general, participants: (1) had diverse expectations for genetic counselors; (2) tended to weigh risks and benefits with regards to genetic testing decisions; (3) had mixed views on termination for lethal and non-lethal genetic conditions; and (4) identified cultural factors which influenced testing and termination such as lack of available resources, societal shame and stigma, and family pressure. These findings may allow prenatal genetic counselors to gain a richer, more nuanced understanding of their Asian patients and to offer culturally tailored prenatal genetic counseling.     

Factors influencing the attitudes and commitment of volunteer alcohol counsellors

The attitudes of volunteer counsellors towards clients with alcohol problems and the counsellors' commitment to their agencies were investigated. A questionnaire was devised, incorporating the Alcohol and Alcohol Problems Perception Questionnaire, and was distributed to volunteer counsellors working within Volunteer Alcohol Counsellors' Training Scheme (VACTS) recognised agencies in England. Two hundred and thirty counsellors were eligible to complete questionnaires, representing approximately half of the total population of volunteer counsellors in VACTS agencies; 141 questionnaires were completed. The results indicated the importance of role recognition by agencies in enhancing counsellor attitudes towards their work; levels of experience, in terms of length of service and the number of clients seen, also appeared to be significant. Future agency commitment seemed to be positively influenced by four agency incentives, defined as role recognition, role support, training, and accreditation. Differing modes of supervision correlated positively with counsellors' attitudes towards clients and with their future agency commitment. It is concluded that voluntary agencies have an important role to play in maintaining positive attitudes and retaining their volunteer staff.     

Attitudes Toward Cystic Fibrosis Carrier and Prenatal Testing and Utilization of Carrier Testing Among Relatives of Individuals with Cystic Fibrosis

A questionnaire and an offer of free carrier testing was mailed to 173 relatives of individuals with CF. The questionnaire addressed their knowledge of clinical and genetic aspects of CF, as well as their attitudes toward carrier testing, prenatal diagnosis, and pregnancy termination for CF. Eighty-one individuals returned the questionnaire (47%) and 50 elected carrier testing (29%). Most respondents underestimated their carrier risk (60%), but overestimated their risk to have a child with CF (63%). Most (93%) indicated they would utilize carrier testing, and 70% would use prenatal testing; however, only 7% would consider terminating a pregnancy for CF. The intention to use prenatal testing was correlated with the perceived health of the proband and whether the respondent was planning to have (more) children. The acceptability of abortion was correlated with the respondent's perceived impact or burden of CF.     

Marriage Guidance Counselling: Ii. What Counsellors Want to Give

Seventy-six counsellors practising under the auspices of the Scottish Marriage Guidance Council responded anonymously to a postal questionnaire. This was designed to survey their attitudes regarding various aspects of counselling and, by means of case-studies, to in vestigate the extent to which they adopted a uniform approach with all clients. The counsellors considered marriage guidance to be appropriate for a wide range of problems. In general, 'nonspecific' factors were considered helpful. However, in line with current trends towards flexibility and eclecticism, the counsellors considered that some interventions, styles and approaches were more appropriate for some problems than for others. The implications of the findings are discussed and some practical recommendations are made.     

Client-counsellor agreement on what happens in counselling

This study used parallel questionnaires to gauge the level of agreement between 31 pairs of clients and their counsellors. Topics investigated included clients' help-seeking behaviour, the working relationship, events regarded as helpful and unhelpful, the importance of counselling versus outside factors in achieving positive outcomes, and terminating. Results indicated that there was group agreement between clients and their counsellors on many aspects of their counselling experience. However, pair-specific agreement was less common with levels varying from low to moderately high. The findings suggest that understandings of the client/counsellor relationship based on group analyses can mask the actual relationship revealed by pair-specific analyses. The findings are discussed in relation to the existing literature and implications for practice are suggested.     

How honest do counsellors dare to be in the supervisory relationship?: An exploratory study

A study was conducted to investigate the extent to which psychodynamic counsellors feel able to disclose sensitive issues in supervision. Ninety-six counsellors in supervision responded to a questionnaire that asked about supervision arrangements, the supervisory working alliance, and the likelihood of disclosing issues such as erotic feelings towards clients and discomfort with the supervisor. Results showed that supervisees were likely to disclose more in individual rather than in collective supervision, when their supervisor was someone whom they themselves had chosen rather than had allocated to them, and when they were supervised independently of the setting in which they counselled rather than in-house. There was a positive correlation between the quality of the supervisory working alliance as experienced by the supervisee and the extent of his or her disclosure. Implications of counsellors feeling inhibited from disclosing particular issues in supervision, and the impact on the quality of their work with clients, are discussed.     

Client Advocacy and Collaboration with Insurance and Laboratory Testing Agencies: A Case Study Illustrating Genetic Counselor Roles

Genetic counseling and the many roles a genetic counselor must assume to provide quality genetic health care are becoming increasingly complex, especially when the genetic condition is rare, and DNA testing is costly and not yet routinely used. A case study of a couple with a family history of retinoblastoma and their pursuit of DNA testing for prenatal diagnosis is presented. The case study illustrates the instrumental role of the genetic counselor in advocating for clients for genetic services such as DNA testing and in educating insurance companies in the nature and importance of such services to achieve improved client health care outcomes.     

Awareness and Attitudes Regarding Prenatal Testing among Texas Women of Childbearing Age

Despite increased visibility and availability of prenatal testing procedures, very little is known about the attitudes among the populace toward these procedures. Using a computer assisted telephone interview of pregnant and non-pregnant women of childbearing age we analyze awareness and attitudes regarding prenatal tests among a diverse group of women of childbearing age in Texas. We also examine maternal characteristics associated with awareness and the willingness to undergo these procedures. While 89% were aware that such tests are available, younger, black and less educated women were less likely to know about prenatal tests for birth defects. Seventy-two percent of respondents said they would want their baby tested while Hispanic and black women were significantly more likely to express an interest than non-Hispanic whites. This study demonstrates the variability of knowledge and beliefs and confirms the importance of taking time to understand an individual’s personal beliefs, knowledge and attitudes about prenatal diagnosis.     

Counselling problem drinkers: The realm of specialists. Alcoholics Anonymous or generic counsellors?

A study was carried out to investigate counsellors' attitudes and experiences in working with people with drinking problems and counsellors' understanding of Alcoholics Anonymous as a helping agent. Ninety-four counsellors responded to a questionnaire about their work with people with drinking problems and their knowledge of AA. Generic counsellors tended not to feel competent working with clients with alcohol problems. Feelings of competence increased with greater experience of the client group and, to a lesser extent, with more hours of specialist training. It was found that counsellors whose intake of alcohol amounted to more than eight units per week were less likely to take on clients with alcohol problems than were those who drank less. Counsellors usually had some knowledge of AA but had little understanding of the 12-step programme that forms the basis of recovery for alcoholics as described by AA. They were, however, in favour of clients attending AA as an adjunct to individual counselling     

Genetic Counselors’ Perceived Responsibilities Regarding Reproductive Issues for Patients at Risk for Huntington Disease

Research indicates that health care professionals’ attitudes may affect patients’ decisions regarding prenatal Huntington Disease testing, but few studies have sampled genetic counselors. In this qualitative study, genetic counselors described their experiences counseling individuals at risk for HD regarding reproductive decision-making. Five major research questions were investigated: 1) What are genetic counselor responsibilities? 2) What issues arise for patients and counselors? 3) How do counselors reconcile prenatal testing with presymptomatic testing? 4) To what extent are counselors’ initial expectations of at-risk patients’ beliefs and behaviors met? and 5) What advice would counselors offer to novice practitioners about working with this patient population? Fifteen genetic counselors experienced in counseling individuals at risk for HD participated in a semi-structured phone interview that yielded several themes. For example, participants identified their primary responsibility as information provision; less prevalent were psychosocial support and facilitating decision making. The most common ethical challenge was testing prenatally for HD which also results in presymptomatic testing of minors. Participants were divided about how directive to be in response to this ethical issue and about termination of a gene positive pregnancy.     

Intention to Participate in Predictive Genetic Testing for Hereditary Cancer: The Role of Attitude toward Uncertainty

This study aimed to identify factors predictive of intentions to participate in genetic testing for hereditary cancer. Measures of the psychosocial influences on intention were based on the theories of reasoned action (TRA) and planned behaviour (TPB) and a new measure of Attitude toward Uncertainty. The participants (the breast cancer sample, n = 124; the colon cancer sample, n = 168) were recruited via a general practitioner's patient database and asked to complete postal questionnaires. The overall response rate was 57.4% (54.7% in the colon cancer sample, 61.4% in the breast cancer sample). In the colon cancer sample, 72% of respondents stated that they would choose to participate in genetic testing for colon cancer susceptibility. In the breast cancer sample, 77% of respondents stated that they would choose to participate in genetic testing for breast cancer susceptibility. The TRA components (attitudes and subjective norms) and Attitude toward Uncertainty emerged as the strongest predictors of intention. The Attitude toward Uncertainty appears to moderate intention in that participants with more negative attitudes toward uncertainty are more likely to undergo the test than those seeking more certainty.     

Counsellors' responses to clients' non-attendance at counselling sessions

Although there has been some study of clients who miss psychotherapy appointments, very little attention has been given to therapists' responses in such circumstances. A questionnaire survey of student counsellors working in British higher education institutions invited them to consider whether or not they would initiate any further contact with each of eight hypothetical non-attenders, described in case vignettes. It was predicted that responses would be influenced both by the subjects' theoretical approach to counselling and by their level of interpersonal dependency, as measured with the Interpersonal Dependency Inventory (Hirschfeld et al., 1977). It was found that the majority of counsellors were not subject to institutional guidelines about contacting non-attenders, and that responses ranged from contacting none to contacting all of the clients. Psychodynamic counsellors were found to be significantly more likely to initiate contact than were humanistic counsellors. There were no significant correlations between contact scores and intepersonal dependency scores but women were significantly more likely to initiate contact than were men. Many of the psychodynamic subjects had commented on their therapeutic use of written communications to interpret non-attendance to their clients.     

An Exploration of Genetic Counselors’ Needs and Experiences with Prenatal Chromosomal Microarray Testing

Because of the higher yield over traditional chromosomal analysis, chromosomal microarray analysis (CMA) is being used increasingly in prenatal diagnosis. Unfortunately, the clinical implication of many copy number variants found on prenatal CMA is uncertain, complicating genetic counseling. Recognizing that uncertain results will be encountered frequently as more of the genome is assayed prenatally, we set out to understand the experiences and needs of genetic counselors when counseling patients about uncertain prenatal microarray results, their comfort with various aspects of prenatal genetic counseling, and their interest in additional education and training about prenatal microarray testing. We first interviewed 10 genetic counselors about their experiences of providing pre- and post-test genetic counseling about prenatal CMA. Based on the findings from the counselor interviews, we developed items for a survey to assess the prevalence of genetic counselors’ attitudes towards, experience and comfort with, and educational needs regarding prenatal CMA. Based on surveys completed by 193 prenatal genetic counselors, we found that when there is an uncertain CMA result, only 59 % would be comfortable providing genetic counseling and only 43 % would be comfortable helping a patient make a decision about pregnancy termination. Being less comfortable was associated with seeing fewer patients having prenatal CMA testing. Respondents expressed a high degree of interest in additional education about prenatal CMA and counseling about uncertain results. Further genetic counselor education and training aimed at improving counselors’ personal comfort with uncertain results and communicating about them with patients is needed.     

Explorations of the effectiveness of a voluntary sector psychodynamic counselling service

This paper reports two studies of individual psychodynamic counselling provided by a voluntary sector service. The first study examines evidence of the effectiveness of counselling, as evaluated by the General Health Questionnaire and Personal Opinion Survey. Measures of the process of counselling indicated the improvements that clients attributed to counselling, the changes that occurred during it, and the factors that were most beneficial, as well as the approaches used by counsellors. The second study, using the CORE Outcome Measure and ratings of problem severity, found counselling to be equally effective with disadvantaged and non‐disadvantaged clients, as defined by British Department of Health criteria, but these clients differed somewhat in their perceptions of helpful aspects of counselling. Both studies also indicated predictors of positive outcome of counselling. The studies are used to illustrate some of the methodological issues around research in this area.     

Clients talk about their experience of seeking counselling

The purpose of this study was to explore the help-seeking behaviour of a sample of counselling clients using a questionnaire and follow-up, semi-structured interviews with 20 counselling clients who were seen at a walk-in, affordable counselling agency located in a mid-sized city in New Zealand. Specifically, clients were asked if they had received counselling previously, what efforts they had made to solve their problems before seeking counselling and with what success, why they chose this particular agency, their initial impression of their relationship with their counsellor, and their reactions to participating in the research. The data were analysed to ascertain themes associated with their decision-making and choices. Findings were discussed in relation to the literature on seeking counselling, how clients determine their need for counselling and the process they go through in deciding when and where to get it. Implications for counsellors are discussed.     

A solution-focused approach to working with clients who are suicidal

Self-harm and suicide are amongst the most challenging and frightening problems that therapists and counsellors can encounter in the course of their work. The risk of clients harming themselves in the course of treatment can debilitate the therapists from acting creatively and collaboratively, and make their actions defensive, focused solely on risk assessment rather than therapeutic change.Yet it is precisely a creative and collaborative response, such as that engendered by solution-focused therapy and other models, that is the most likely to facilitate change and re-empower clients to take back charge of their lives. This article describes a solution-focused approach to working with suicidal clients that can be used in conjunction with traditional approaches and which focus on establishing safety as well as assessing risk.Working from this model the clinician shifts to identifying client strengths and coping skills, to collaborating with the client to establish meaningful goals and to helping the client envision a positive future. Arguably, such an approach can increase collaboration between therapist and client and lead to a more client-centred safety plan.     

Ethical issues in genetic counseling: A comparison of M.S. counselor and medical geneticist perspectives

New technologies available in the field of medical genetics have increased the importance of responsible ethical decision-making among genetic counselors. A 1985 national survey of M.D. and Ph.D. genetic counselors assessed ethical attitudes using case scenarios designed to simulate dilemmas faced in genetic counseling (Wertz and Fletcher, 1988b). The current study focuses on attitudes of M.S. genetic counselors using similar scenarios, allowing for effective comparisons. M.S. counselors were more willing than M.D. and Ph.D. counselors to maintain patient confidentiality when screening for Huntington's Disease and occupational diseases, and a greater number would agree to counsel patients pursuing prenatal testing for sex selection. A majority of M.S. counselors would disclose an XY karyotype to a phenotypically female patient. M.S. counselors reasoned that respect for patient autonomy and patient confidentiality justified their decisions in many cases. The importance of these principles is discussed and questioned.