Talking about Disability in Prenatal Genetic Counseling: A Report of Two Interactive Workshops

Women are commonly offered testing in pregnancy to determine the health of their baby. An important component of informed decision-making about prenatal testing is provision of relevant, accurate, meaningful information concerning the conditions that are being tested for—many of which, such as Down syndrome, are associated with a varying degree of physical and intellectual disability. A range of health professionals, including genetic counselors, may provide information and support throughout the testing process, but available data suggest that discussion of disability is frequently absent or limited. To investigate genetic counselors’ perceptions of this situation and identify potential barriers to discussion we facilitated interactive workshops at the 2007 National Society of Genetic Counselors Annual Education Conference (NSGC) and the 2008 European Meeting on Psychosocial Aspects of Genetics (EMPAG). Working groups identified relevant psychosocial issues and impediments to discussion (NSGC) or used a two-part scenario to promote discussion (EMPAG) and reported findings in notes and a closing plenary discussion. Inductive content analysis revealed that participants considered informed decision making to be a major reason for presenting information about disabilities in prenatal genetic counseling and endorsed the value of including information about daily life with Down syndrome and other disabilities. However, they identified three broad types of impediments to such discussion: counseling issues concerning the most appropriate manner to discuss disability under the complex circumstances of prenatal genetic counseling, less than optimal training and experience in addressing these issues, and perceived limitations in the participants’ knowledge and understanding of life with disability. Our analysis of the responses from the workshop participants and additional thoughts on these issues have led us to develop recommendations for further research, training and clinical practice.     

Predictors of Counselor Educators' Cultural Discriminatory Behaviors

Purposes of this study were to (a) examine relationships among counselor educators' attitudes, behaviors, and perceptions of institutional support concerning race, gender, sexual orientation, and social class and (b) investigate the effects of attitudes and institutional perceptions on behaviors. A nationwide sample of 154 counseling faculty completed the Survey of Cultural Attitudes and Behaviors (K. L. Miller & S. M. Miller, 1997). Faculty attitudes directly predicted behaviors. Perceptions of institutional support directly and indirectly predicted behaviors. The authors identify strategies for modifying discriminatory behaviors.     

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.     

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.     

Effects of a Documentary Film on Public Stigma Related to Mental Illness Among Genetic Counselors

Many people, including genetic counselors, have been found to hold stigmatizing attitudes towards people with mental illnesses. We aimed to determine whether these attitudes could be changed by exposing genetic counselors and genetic counseling students to a documentary film about people with mental illness. We screened the documentary at the 2010 North American conferences for genetic counselors. Immediately before (T1), immediately after (T2), and one month after (T3) watching the documentary, participants self-rated their comfort with asking patients about mental illness, and they completed scales measuring two aspects of stigma: stereotype endorsement, and desire for social distance. A total of 87 T1 and T2 questionnaires, and 39 T3 questionnaires were returned. At T2 and T3, 34.5% and 48.7% respectively reported feeling more comfortable to ask patients about mental illness. Scores on the social distance and stereotype endorsement scales decreased significantly from T1 to T2, but returned to initial levels at T3. The findings suggest the documentary increased genetic counselors' and genetic counseling students' comfort with asking about mental illness and temporarily decreased their stigmatizing attitudes.     

A Qualitative Investigation of Somali Immigrant Perceptions of Disability: Implications for Genetic Counseling

This study examined the potential utility of genetic counseling services for Somali immigrants by investigating their perceptions of disability. Five Somali women participated in structured interviews that assessed their perceptions of the nature, causes, and impact of disability, and care for persons with disabilities. Using a Heideggerian Hermeneutics qualitative method of analysis, six major themes emerged: (1) disability refers to both physical and mental conditions, with mental disability generally thought of first and as more severe; (2) in Somalia, the family cares for disabled family members, treating them as if they were normal (3) there are major cultural differences between Somalia and the United States in how persons with disabilities are treated; (4) caring for a person with a disability is stressful for the family; (5) Allah determines whether or not a child will be disabled, and this cannot be predicted or altered; and (6) family is the primary life focus, and therefore, risk of disability does not affect reproductive decisions. These themes suggest that traditional genetic counseling may have limited utility for Somali immigrants. We recommend several modifications to traditional genetic counseling for Somali patients that also may be useful for populations that have similar beliefs.     

Sociocultural studies of families of children with intellectual disabilities

This article reviews recent sociocultural studies of families of children with intellectual disabilities to introduce the range of research conducted from this perspective and to highlight the methodological, conceptual, and theoretical contributions of this approach to the study of mental retardation. Sociocultural studies examine families within their cultural, historical, and sociopolitical contexts. This type of research is comparative across different cultural groups, but is not limited to such comparisons. Sociocultural studies use varied theories and methods, but they share a focus on families' coproduction of meanings and practices related to intellectual disability; families' responses and adaptations to disability; and how their understandings and experiences are shaped within larger social institutions and inequities. Sociocultural approaches take into account community contexts that matter to families with members with mental retardation or developmental delay, and they examine the broader systems that define and position individuals with disabilities and their families. As a whole, these studies provide a more experiential and holistic view of families' beliefs and adaptations within sociopolitical worlds, and offer new tools by which to study the families of children with developmental delays within and across different cultural groups.     

Mothers’ Perspectives on Their Child’s Mental Illness as Compared to Other Complex Disorders in Their Family: Insights to Inform Genetic Counseling Practice

To facilitate the development of a therapeutic alliance in genetic counseling, it is important that the counselor understands how families might perceive the condition that constitutes the reason for the referral. Through training and professional practice, genetic counselors develop a thorough understanding of families' perceptions of the conditions that are common indications for genetic counseling. But, for referral indications that are less frequent, like serious mental illnesses, genetic counselors may feel less confident in their understanding of the family's experience, or in their ability to provide psychosocial support when serious mental illness is reported in a family history. This may impede the establishment of a therapeutic alliance. As research shows that most referrals for genetic counseling related to serious mental illness are for female first-degree family members of affected individuals, we sought to explore how this group perceives serious mental illness. To provide a frame of reference with which genetic counselors may be more familiar, we explored how women perceived serious mental illness compared to other common complex disorders in their family. We conducted semi-structured interviews with women who had a child with a serious mental illness (schizophrenia, schizoaffective disorder, bipolar disorder) and a first-degree relative with another common complex disorder (diabetes, heart disease, cancer). Interviews were transcribed and subjected to thematic analysis. Saturation was reached when nine women had participated. Serious mental illness was perceived as being more severe and as having a greater impact on the family than diabetes, heart disease, or cancer. Themes identified included guilt, stigma, and loss. Some of the most important issues that contribute to mothers' perceptions that serious mental illness is more severe than other common complex disorders could be effectively addressed in genetic counseling. Developing a heightened awareness of how family members experience a relative's mental illness may help genetic counselors to be better able to provide psychosocial support to this group, whether serious mental illness constitutes the primary reason for referral or appears in the family history during counseling for a different referral reason.     

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.     

Suicide survivors' perceptions of the treating clinician

Seventy-one suicide survivors were surveyed about their perceptions of the clinicians who were treating their loved one at the time of death. Survivors provided information regarding their perceptions and attitudes toward clinician behaviors before and after the suicide and their perceptions of helpful and troubling aspects of clinician behaviors. Results indicated that survivors share a number of common opinions regarding the mental health care providers treating their loved ones. Several differences existed between survivors who consider lawsuits against mental health care providers versus those who do not. The implications of these findings for clinical practice, legal issues, surviving suicide, and future research are discussed.     

Effects of counseling Ashkenazi Jewish women about breast cancer risk

The goal of this study was to determine whether genetic counseling or psychosocial group counseling provided to Ashkenazi women can reduce breast cancer worry, cancer risk perception, and interest in having genetic testing. Women (N=211) were randomized to receive individual genetic risk counseling, to receive a group psychosocial group counseling, or to serve as a control group. The authors found that both counseling methods reduced cancer worry, lowered perceptions of breast cancer risk, and decreased interest in having genetic testing. Counseling can help women gain a more accurate perception of their risk, expose them to the benefits and limitations of genetic testing, and reduce their worry about cancer.     

Some normative data on mental health professionals' attitudes about racial minorities and women

Although codes of ethics of the mental health professions and the recently developed race- and gender-specific models of counseling and psychotherapy stipulate positive and accepting attitudes toward racial minorities and women, formal assessment of these attitudes has been hindered by the absence of appropriate measurement tools and generalizable data. This study provides some normative data by reporting responses of 705 psychologists and social workers to the Quick Discrimination Index, a psychometrically sound 23-item self-report measure previously administered to several different professional groups. Analysis indicated psychologists and social workers reported particularly positive attitudes toward racial minorities and women but expressed the same racial and sex contradictions, ambivalences, and vulnerabilities reported by the general public.     

Sexual Abuse Prevention for Individuals with Mental Retardation: Considerations for Genetic Counselors

It is now widely recognized that children, adolescents, and adults with mental retardation are especially vulnerable to sexual abuse. Because at least 10% of genetic conditions are reported to include mental retardation as a feature, the provision of services to individuals with mental retardation represents a substantial portion of the case load for many genetic counselors. Our objective is to educate genetic counselors and other health professionals about this vulnerable population in order to enhance the frequency and efficacy of inquiry into sexual education and sexual abuse prevention training for patients with mental retardation. The following review article is intended to assist genetic counselors by increasing their knowledge of factors that lead to sexual abuse and provides recommendations for integrating this information into the counseling interaction.     

Employment of individuals with mental disabilities: business response to the ADA's challenge

This research examines the response of the business community to the Americans with Disabilities Act (ADA) with specific focus on the employment of those with mental disabilities. The ADA is viewed as an important "rational myth" in that it represents both a legal and normative demand with which businesses are expected to comply. Yet employers' responses will be influenced by their attitudes toward persons with mental disabilities as well as their concern with legal sanction for discriminatory behaviors. A telephone survey was completed in a southern metropolitan area with a random sample of 117 businesses in order to access the knowledge employers have about the ADA (and its inclusion of those with mental disabilities), the compliance with the ADA, the employment practices, and the role played by stigma in the employment of individuals with mental disabilities. In terms of specific practices which indicated compliance with the ADA, a little over one-third of the companies which were surveyed by telephone had a Title 1 implementation plan, 15% had specific policies for hiring those with mental disabilities, and 37.6% had indeed hired such an individual. The role of coercive and normative rationales for compliance to the ADA was examined. It was found that receiving formal information about the ADA, threat of legal sanction, and previous employment of those with mental disabilities were all significant predictors of compliance with the ADA. Stigmatizing attitudes did not predict compliance, though employers did view those with mental disabilities with more discomfort than other types of employees.     

Understanding the Behavioral Determinants of Mental Health Service Use by Urban, Under-Resourced Black Youth: Adolescent and Caregiver Perspectives

Black adolescents with mental health problems are less likely than non-Black adolescents with mental health problems to receive treatment, primarily for non-financial reasons including negative perceptions of services and providers, and self-stigma associated with experiencing mental health problems. To better understand these obstacles, 16 adolescents and 11 caregivers, recruited from two K-8th grade elementary-middle schools, participated in four focus groups guided by the unified theory of behavior to explore mental health help-seeking behaviors and perceptions of mental health services. In the focus groups, caregivers acknowledged more positive attitudes about seeking mental health services than adolescents, but both expected the experience of actually doing so to be negative. Adolescents and caregivers also acknowledged social norms that inhibit their mental health help-seeking. Therefore, we conclude that interventions targeting expectancies and social norms might increase the connection of urban, under-resourced Black adolescents and their families to mental health services, and be particularly important given the long-term consequences of untreated mental health problems for this group.     

Health Beliefs and Behaviors of Women Who Have Received Genetic Counseling For Breast Cancer

There are both genetic and behavioral risk factors for breast cancer, but the interaction between these factors is not clear. Little is known about the impact of receiving genetic risk information for breast cancer on behaviors such as diet and physical activity. Seven focus groups were conducted with 23 women who had recently received genetic counseling for breast cancer, in order to explore health beliefs and behaviors following genetic counseling. Findings revealed that there was much confusion and uncertainty about the associations between health behaviors and breast cancer risk, and participants reported that receiving genetic counseling had little impact on health protective behaviors. Further research is required to understand variation in response to genetic risk information, and to assess the impact of providing additional information regarding lifestyle factors.     

Attitude of Medical School Students in China Towards Genetic Testing and Counseling Issues in FXS

Fragile X syndrome (FXS) is the most common form of inherited intellectual disability. However, genetic testing protocols and genetic counseling guidelines for FXS are not yet established in mainland China. In the present study, we conducted a comprehensive analysis using a self-administered questionnaire among students at the Xiangya medical school to investigate their attitude towards genetic testing and counseling issues of FXS. We have gained a general understanding of the attitudes of medical students towards these FXS issues in China. This information is of immense importance to develop appropriate genetic tests and to train counselors for FXS. As the medical school students surveyed are prospective physicians who will be a part of the Chinese health system, our survey was focused on the basic knowledge of FXS, population-based FXS screening, confidentiality and reproductive options for mutation carriers. The study demonstrated that only less than one third of the participants had heard about FXS. 94.6 % of participants were in favor of FXS screening for women in their reproductive age who had a genetic history of FXS. Furthermore, only half of the participants would inform their families about their genetic status in case of positive test results, and more than half of the participants supported natural conception and prenatal diagnosis for FXS mutation carriers. Additional findings and research implications are also discussed. This survey targeting potential doctors provides important information for the development of FXS genetic test and counselor training for the Chinese health system.     

Individuals with intellectual and developmental disabilities: Do educators assign them a fully human status?

The present research investigates the humanity attributions to individuals with intellectual and developmental disabilities (IDD). In three studies, professional educators, who worked in day‐care or community centers, were examined. Humanity attributions were assessed using emotion‐based and trait‐based measures. As expected, individuals with IDD were denied a fully human status: they were perceived as having more non‐uniquely than uniquely human attributes. Furthermore, a lower human status was assigned to individuals with IDD in relation to educators. We also discovered that humanity attributions, but not attitudes, were related to approach/avoidance responses. Altogether, findings show the importance of considering humanity perceptions in the study of social relationships of individuals with IDD. Dehumanizing perceptions can explain the differential treatment these individuals face in various social settings.     

Studying intergenerational transmission of eating attitudes and behaviors: methodological and conceptual questions.

Associations between parent and child attitudes and behaviors related to eating and weight were examined among college-age men and women and their mothers and fathers (ns = 44, 47, 87, and 66, respectively). Parent attitudes and behaviors were assessed from the perspective of the parent and the student, and 2 pathways of influence were examined: modeling and direct criticism. In general, students' attitudes and behaviors were more strongly related to perceptions of their parents rather than to parents' own self-reports. There was more support for perceived direct criticism as a pathway of influence, particularly for daughters. Perceived criticism about eating and appearance had large associations with student attitudes and behaviors. Weight loss behavior was related to perceived criticism among daughters and to perceived paternal eating attitudes among sons. Results highlight important methodological and conceptual questions for intergenerational research.     

Inferring sexual interest from behavioral cues: Effects of gender and sexually relevant attitudes

Research has found that men impute more sexual meaning to others' behavior than do women. However, little research has examined the possibility that men and women share perceptions of the sexual connotativeness of certain behaviors but diverge in their perceptions of other behaviors. In Study 1, 162 male and 186 female undergraduates, predominantly Caucasian, rated the degree to which each of 27 behaviors of male and female targets connoted a desire for sexual intercourse. Multivariate analyses of variance revealed that, whereas men perceived all but two of the female target behaviors more sexually than women, men and women differed in their perceptions of the sexual connotativeness of only about half of the male target behaviors. A factor analysis revealed three factors for both male and female target behaviors, reflecting mundane dating behaviors, romantic behaviors, and sexual behaviors. Relative to women, men perceived only the mundane dating behaviors more sexually, although regression analyses showed these effects to be moderated by subjects' attitudes toward women. Study 2 examined the extent to which sexually relevant attitudes (e.g., sex role stereotyping, adversarial sexual beliefs, and rape myth acceptance) moderate subjects' perceptions of the sexual connotativeness of the behaviors. Men, particularly those who endorsed traditional, sexually relevant attitudes, were more likely than women to impute sexual meaning to the behaviors. The implications of this for dating situations are discussed.The author wishes to thank Mark Leary and two anonymous reviewers for their comments and suggestions on earlier versions of this article.