What Is It Like To Be in the Minority? Ethnic and Gender Diversity in the Genetic Counseling Profession

Increasingly, the genetic counseling profession is recognizing the need for greater ethnic and gender diversity. Recruitment and retention efforts may be enhanced by better understanding of the experience of individuals considered to be underrepresented in the profession. In this qualitative study, 8 genetic counseling students and 7 practicing genetic counselors who were ethnic minority and/or male participated in semi-structured telephone interviews regarding how they were introduced to the field, perceived career supports and barriers, their experiences within training programs and the field, and suggestions for increasing diversity. Introduction to the field tended to be late and accidental. There were several career supports (e.g., field combines science and helping others) and barriers (e.g., lack of information about the field). Participant experiences, although primarily positive, included instances of passive, unintentional discrimination; and there were internal and external pressures to be diversity experts and positive representatives of their group. Participants reported positively impacting colleagues’ cultural competency and offering a different presence within clinical settings. Suggestions for increasing diversity and research recommendations are given.     

Community-Based Research in India: A Case Example of International and Transdisciplinary Collaboration

While there has been a trend toward greater disciplinary collaboration over the last several decades, the emergence of the HIV pandemic has required that disciplines work more closely and creatively to generate the multiple and innovative approaches necessary to meet the demands for effective prevention and treatment. This paper describes the nature of collaborative relationships among U.S. and Indian anthropologists, psychologists, demographers, epidemiologists, physicians and representatives of other fields and sectors in conducting a large scale, multi-year HIV/STD prevention project directed toward married men in urban poor communities in Mumbai (Bombay), India. The project has challenged members of the participating disciplines to develop a transdisciplinary conceptual model, to test the model with community-based formative research and to utilize the results in the development and implementation of a multi-level (community, provider and patient) intervention. The paper describes the interaction among disciplines and international sectors in the conceptualization, methodology and community-based action components of the project. In addition, it examines both the inhibiting and facilitating factors that are a part of the collaborative process. The paper concludes with implications for future transdisciplinary partnerships.     

Vision and oral health needs of individuals with intellectual disability

Over the past 20 years, there has been an increased emphasis on health promotion, including prevention activities related to vision and oral health, for the general population, but not for individuals with intellectual disability (ID). This review explores what is known about the prevalence of vision problems and oral health conditions among individuals with ID, presents a rationale for the increased prevalence of these conditions in the context of service utilization, and examines the limitations of the available research. Available data reveal a wide range of prevalence estimates for vision problems and oral health conditions, but all suggest that these conditions are more prevalent among individuals with ID compared with the general population, and disparities exist in the receipt of preventive and early treatment for these conditions for individuals with ID. Recommendations for health improvement in these areas include better health planning and monitoring through standardized population-based data collection and reporting and increased emphasis on health promotion activities and early treatment in the healthcare system.     

Who Are the Next Generation of Genetic Counselors? A Survey of Students

Genetic counseling students were surveyed about their backgrounds, application process to genetic counseling programs, and career motivations and plans. Program directors from 27 accredited programs were asked to distribute 362 surveys to students. Fifty-two survey items assess demographics; sources of support for pursuing a genetic counseling career (information about genetic counseling, encouragement/discouragement from others); career motivations (reasons for applying and for becoming a genetic counselor); and career certainty. Two hundred and thirty-five usable surveys were returned (64.9% usable return rate). Most respondents were Caucasian females (mean age = 25.4 years). About 13% identified as ethnic minorities, and about one-third reported family histories of a genetic condition(s). Most respondents learned about the field in classes, and most were strongly encouraged by family and friends to pursue genetic counseling. Reasons rated as most important for becoming a genetic counselor included helping others and intellectual stimulation. Recruitment, training, and research recommendations are given.     

How informed is online informed consent?

We examined participants' reading and recall of informed consent documents presented via paper or computer. Within each presentation medium, we presented the document as a continuous or paginated document to simulate common computer and paper presentation formats. Participants took slightly longer to read paginated and computer informed consent documents and recalled slightly more information from the paginated documents. We concluded that obtaining informed consent online is not substantially different than obtaining it via paper presentation. We also provide suggestions for improving informed consent--in both face-to-face and online experiments.     

Attitudes of academic and clinical researchers toward financial ties in research: A systematic review

Involvement of industry in academic research is widespread and associated with favorable outcomes for industry. The objective of this study was to review empirical data on the attitudes of researchers toward industry involvement and financial ties in research. A review of the literature for quantitative data from surveys on the attitudes of researchers to financial ties in research, reported in English, resulted in the 17 studies included. Review of these studies revealed that investigators are concerned about the impact of financial ties on choice of research topic, research conduct and publication, but this concern is less among investigators already involved with industry. Researchers approve of industry collaboration and financial ties when the ties are indirectly related to the research, disclosure is upfront, and results and ideas are freely publicized. However, their trust in disclosure as a way to manage conflicts may reveal a lack of awareness of the actual impact of financial incentives on themselves and other researchers. This project was supported by grant number 5 T32 HS00086 from the Agency for Healthcare Research and Quality, US Department of Health and Human Services. Dr. Glaser, Ph.D., Postgraduate Researcher, is currently Associate Specialist, Institute of Governmental Studies, UC Berkeley.     

The relationship of thought-action fusion to pathologicial worry and generalized anxiety disorder

Meta-cognitive beliefs associated with pathological worry and generalized anxiety disorder (GAD) may encompass the likelihood subtype of thought-action fusion (TAF), the belief that one's thoughts can influence outside events. In the current study of 494 undergraduate college students, positive correlations between scores on the Penn State Worry Questionnaire (PSWQ) and the two Likelihood subscales of the TAF Scale were found, and participants endorsing at least some DSM-IV diagnostic criteria for GAD scored significantly higher on both TAF-Likelihood subscales than participants reporting no GAD symptoms. However, these TAF scales did not predict GAD diagnostic status with PSWQ included as a predictor. In contrast to previous research, the TAF-Moral scale did not correlate with worry. Relationships between TAF, pathological worry, and meta-cognition are discussed in relation to GAD.     

Thought action fusion: can it be corrected?

The goal of this study was to investigate whether or not a brief educational intervention delivered prior to engaging in an anxiety-provoking task (writing a sentence about hoping that a friend/relative was in a car accident) would be effective in offsetting anxiety in college students with a strong propensity to endorse statements of thought action fusion (TAF). As hypothesized, individuals receiving the educational intervention were less anxious than a placebo intervention control group at post task; they were also less likely to endorse statements of TAF after receiving the educational intervention. Also, those who chose to neutralize after writing the sentence (regardless of experimental group) were more likely to report feeling guiltier, more immoral and a greater sense of responsibility about writing the sentence prior to neutralizing than those who did not subsequently neutralize. These results are discussed in relation to the cognitive theory of obsessive-compulsive disorder and implications for prevention programs.