Genetic Counseling Practices in Germany: A Comparison Between East German and West German Geneticists

As part of an international study of ethics and genetics, we present a comparison between survey responses of 43 East German and 212 West German geneticists to anonymous questionnaires. Both groups indicated that the experience of the Third Reich has impacted the genetics profession in Germany today. East German geneticists reported more directive counseling practices after prenatal diagnosis for 10 of 26 conditions than those from West Germany. When asked to give their personal opinions about pregnancy termination, East Germans were more accepting of abortion than their West German colleagues for 7 of 24 fetal indications. In addition, there were significant differences between the two sample groups for 8 questions on the perception of disability and society. Discussions with German geneticists suggest that, while both groups were affected by Germany's experience of Nazism, different abortion laws, political systems, and ideas about the doctor-patient relationship in former East and West Germany may account for discrepancies in reported genetic counseling practices and in attitudes toward abortion and disability.     

Attitudes of Health Care Trainees About Genetics and Disability: Issues of Access, Health Care Communication, and Decision Making

Prior studies suggest that knowledge and attitudes of health care professionals influence patient communication and medical decision making. To study this dynamic in the context of genetic disability, we developed a survey on health professionals' attitudes regarding disability and genetic screening and pilot-tested it on a sample of medical students, residents, and genetic counseling students (N = 85). Despite minimal experience with disability or genetics, most respondents reported feeling comfortable dealing with genetics (59%) and disability (75%). The majority felt that disability caused significant suffering for both the person (51%) and family (64%), and that research should be directed toward preventing genetic disability (62%). Similar to prior literature, perceived Quality of Life was most often based on degrees of physical and cognitive functioning, pain, and social support. However, differences were found between genetic counseling trainees and other medical trainees in their relative emphasis of social versus medical issues in questions of disability and genetic testing, and these response patterns were associated with differences in the groups' priorities for offering information about social resources. Respondents agreed that access to genetic testing and information is personal and that testing should be available upon request for oneself (68%) and to a lesser degree for one's fetus (55%) or child (41%). However, the same individuals frequently stated that society should regulate access to such technologies. Although most felt that the patient and professional should jointly make such decisions on a case-by-case basis, it was also seen as appropriate for the health care professional to occasionally decline genetic testing. It seems apparent that training and experience influence knowledge and attitudes. Therefore, it is critical to document knowledge and attitudes of various health care providers and trainees, including differences between various specialties, to improve educational interventions geared to this area.     

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.     

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.     

Commentary: How Individual and Profession-level Factors Influence Discussion of Disability in Prenatal Genetic Counseling

Hodgson and Weil (Journal of Genetic Counseling, 2011) reports on two interactive workshops in which genetic counselors identified a broad set of counseling issues that may be impediments to promoting an adequate discussion of disability in prenatal genetic counseling. The present commentary discusses two factors that we infer underlie these counseling issues. First, countertransference concerning disability, which is normal and expected, may influence genetic counselors’ decisions about raising and exploring the complex topic of disability in prenatal genetic counseling. Second, the limited involvement of the profession of genetic counseling in the complex social and ethical issues of disability provide little guidance to the individual genetic counselor with respect to discussing disability in prenatal diagnosis counseling. We suggest both factors must be acknowledged and addressed in order to adequately implement the recommendations presented in Hodgson and Weil (Journal of Genetic Counseling, 2011) as well as other efforts to increase discussion of disability in prenatal diagnosis counseling in the service of informed decision making.     

Evaluating effectiveness of an infusion learning model on attitudes of physical education majors

The purpose was to evaluate the effect of an infusion curriculum model on attitudes of physical education majors toward teaching students with disabilities. 91 undergraduate students (61 men, 30 women) matriculating through the core curriculum of physical education teachers were exposed to the infusion curriculum as part of each course during one academic year. Attitudes were assessed pre- (Fall) and posttest (Spring) on the Physical Educator's Attitude Toward Teaching Individuals with Disabilities III. Analysis indicated a significant positive change in attitudes toward teaching students with disabilities. Findings suggest, when exposed to issues of disability by infusion into course content, these students self-reported they would have increased confidence in teaching and an appreciation when teaching students with disabilities. An independent validation of this change would be valuable.     

Acculturation in Women with Mental Retardation and Its Impact on Genetic Counseling

The provision of genetic counseling to women with mild mental retardation poses many challenges, some directly related to their developmental and cognitive disabilities. Traditional genetic counseling models, in which decision-making is largely based on the understanding of factual information, are particularly affected by the intellectual limitations which characterize this population. Equally important, however, are these women's attitudes, perceptions, and behaviors related to their involuntary inclusion into a highly stigmatized social group. Common themes among these women which surface in the genetic counseling setting include the denial of mental retardation, a hierarchical perception of their own and others' disabilities, and a strong motivation to conceive and parent a child. Such attitudes and behaviors may be symptomatic of acculturation, as these women struggle to take on accepted social roles while rejecting the stigma of intellectual disability. In contrast to factual information, the counselee's ability to discuss emotions and perceptions is not necessarily hampered by her intellectual limitations. A focus on the recognition and discussion of psychosocial issues provides a more meaningful approach than traditional genetic counseling models for facilitating informed reproductive decisions among women with mental retardation.     

Perception of genetic risk among genetic counselors

A mailed survey of female prenatal genetic counselors, obstetric nurses, and high school biology teachers was conducted to determine if these groups hold different attitudes toward genetic risk and to investigate the extent to which any differences result from the effect of different professional experiences. In this study, the participants were 166 genetic counselors, 116 obstetric nurses, and 78 biology teachers (n = 360). Survey participants completed a written questionnaire designed to assess their numeric estimate of the empiric risk for birth defects/genetic problems, their subjective perception of this risk, and their personal use of prenatal diagnosis. Genetic counselors were found to be less likely than the other groups to consider the frequency of birth defects/genetic problems as rare and were 10 times more likely than nurses and 8 times more likely than teachers to have had prenatal diagnosis. Furthermore, more than half of the prenatal diagnosis procedures had by genetic counselors were not medically indicated. These results suggest that genetic counselors have an increased perception of genetic risks relative to nurses or teachers. Possible explanations for this finding are discussed, and the potential role of discordant risk perception in creating biases in the genetic counseling process is explored.     

Parkinson’s Disease: Patients’ Knowledge,Attitudes, and Interest in Genetic Counseling

The objective of this study was to assess the genetics knowledge of patients with Parkinson’s disease (PD), and to explore their attitudes on genetic testing and interest in genetic counseling. We surveyed 158 patients from the University of Maryland Parkinson’s Disease and Movement Disorders Center. Patients averaged a score of 63% on general genetics knowledge and 73% on PD genetics knowledge. Participants had an overall positive attitude toward genetic testing: 80% believed that the use of genetic tests among people should be promoted, and 83% would undertake genetic test for PD if it was available. Patients reported a high interest to discuss the benefits, risks, and impacts of genetic testing for PD (mean sum score?=?26, range?=?9–35), and 43% patients expressed interest in meeting with a genetic counselor. Multivariate regression analysis showed that patients who had more positive attitudes toward genetic testing for PD were more interested in meeting with a genetic counselor (β?=?0.6, p?<?0.001). This study is the first to demonstrate an interest in genetic counseling among patients with PD. Our findings demonstrate a new niche for genetic counselors to support patients in clarifying gaps or misconceptions in knowledge about PD genetics as well as the possible risks, benefits, and limitations of genetic testing.     

Socio-ecological influences of attitudes toward disability among Kenyan undergraduate students

This study examined personal and contextual variables as predictors of attitudes toward disability at a Kenyan higher education setting. Participants were a convenience sample of 309 undergraduate students at a Kenyan university enrolled in Sociology, Social Work, Psychology, Political Science, and Public Administration majors. Data on attitudes were collected using the Attitudes Towards Disabled Persons scale (ATDP: Antonac & Livneh, 1988). A cross-sectional survey design was employed for data collection, and a multiple regression analysis was used for data analysis. Results revealed that the model was significant: F (9, 250)?=?2.784, p?=?0.004. However, only age (β?=?0.173, p?=?0.044) significantly predicted attitudes towards disability, indicating older students held more positive attitudes than their younger counterparts. Older students had a more favourable attitude towards people with disabilities than younger students. Seniority, by age, is highly valued in Africa than perhaps anywhere in the world. Kenyan older adults may be key to enhancing favourable attitudes toward individuals with disabilities in Kenya as well as interventions aimed at changing negative attitudes towards people with disabilities.     

A factor analysis for identifying people with disabilities’ mobility issues in built environments

Neighborhood built environments (BE) have been recognized as an important aspect that can, directly and indirectly, impact people with disabilities’ mobility. While many efforts have been made to improve the quality of BE, people with disabilities still perceive inequality in BE. The objective of this study is to identify the factors influencing people with disabilities’ attitudes toward BE that can facilitate or suppress their mobility, using exploratory factor analysis. This study specifically focuses on people with physical disabilities and people with visual impairments living in Austin, TX and Houston, TX metropolitan areas in USA. Data was gathered through an online survey. This study identified three factors from the sample: 1) barrier-free BE; 2) BE supporting safe travel; and 3) walkable BE. In addition, the factors were compared according to the respondents’ demographic information, such as income level, disability type, and private car use availability in households. Regarding income level, low-income individuals with disabilities perceived BE more negatively than their counterparts did. As for private car availability, people with disabilities who have no car in their households had a more negative perception of BE. However, no differences were found in the attitudes across disability types. This study contributes to understanding what BE factors are important for people with disabilities. The findings suggest the importance of establishing more targeted and prioritized strategies, considering people with disabilities’ neighborhoods and individual characteristics, for the improvement of their mobility.     

The Perceptions of Lutheran Pastors Toward Prenatal Genetic Counseling and Pastoral Care

The purpose of this study is to explore a theological perspective toward genetic counseling. A survey was sent to 207 ministers within the Evangelical Lutheran Church of America (ELCA), to determine their perspectives toward four different scenarios in a prenatal genetic counseling setting. The four different scenarios included situations involving Huntington disease, Down syndrome, trisomy 18, and anencephaly. Nearly all ELCA Lutheran pastors perceived genetic counseling as beneficial and useful and wanted to be involved in the decision-making process for whether or not to terminate the pregnancy. Their views toward termination of pregnancy varied depending on the severity of the genetic abnormality. Severity in this study was based upon life compatibility. As the severity of the genetic abnormality increased, the percentage of Lutheran pastors who viewed termination as an option increased from 23% (Down syndrome) to 62% (anencephaly). A better understanding of how spiritual leaders view genetic counseling would provide an insight into how genetics and religious beliefs together play a significant role in shaping the decisions of those faced with abnormal pregnancies.     

Implementing Group Prenatal Counseling for Expanded Noninvasive Screening Options

Recently, practices have begun integrating cell-free DNA-based noninvasive prenatal screening as a screening option for a variety of genetic conditions. According to the National Society of Genetic Counselors, the integration of cfDNA screening into clinical prenatal practice may "significantly shift the paradigm of prenatal testing and screening for all women." The purpose of this study was to determine whether group information sessions can feasibly serve as an alternative to extended one-on-one genetic counseling for the increasing number of women making decisions about prenatal testing and screening. This study assessed the effect of group genetic information sessions coupled with abbreviated counseling on pregnant women’s knowledge about and attitudes toward prenatal testing and screening.     

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.     

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.     

The Amish: Perceptions of genetic disorders and services

Previous studies of the closed Amish population have proven to be valuable in the field of genetics, however they have not explored the Amish parents' opinions and attitudes concerning genetic conditions and services. This exploration is necessary in order to provide culturally sensitive health care to a population at an increased risk for certain genetic conditions. The purpose of the present study was to examine the Amish population's general knowledge of genetic disorders, services, and the terminology used in describing inherited conditions, as well as their attitudes toward medical care and ethical and reproductive issues. Information was obtained from 17 Amish families, 12 who had an incidence of a genetic condition and five who had one or more children with other special health care needs, during personal interviews conducted in their homes in Lancaster, Pennsylvania. Results of the interviews showed that the birth of an affected child did not deter subsequent reproduction, that the majority of the parents were never offered genetic counseling or prenatal testing, and that the parents are interested in understanding the cause of their children's problems and recurrence risks.     

Selective Abortion for Down Syndrome: The Relation Between the Quality of Intergroup Contact,Parenting Expectations,and Willingness to Terminate

This study examines the links between familiarity with individuals with Down syndrome (DS), perceptions of parenting a child with DS, and willingness to consider selective termination subsequent to a fetal diagnosis of DS. Within a sample of childless young adults (N = 280), those reporting personal familiarity indicated both more positive attitudes toward parenting a child with DS and more certainty that they would not abort following a prenatal diagnosis. In further support of contact theory, the quality of the past intergroup interactions moderated these findings. The potential role of negative stereotypes in selective‐abortion decision making and implications for prenatal counseling protocols are discussed.