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.     

Categorical perception of race

Traditionally, research demonstrating categorical perception (CP) has assumed that CP occurs only in cases where natural continua are divided categorically by long-term learning or innate perceptual programming. More recent research suggests that this may not be true, and that even novel continua between novel stimuli such as unfamiliar faces can show CP effects as well. Given this, we ask whether CP is dependent solely on the representation of individual stimuli, or whether stimulus categories themselves can also cause CP. Here, we test the hypothesis that continua between individual faces that cross the categorical boundary between races show an enhanced CP effect. We find that continua running from a black face to a white face do, indeed, show stronger CP effects than continua between two black faces or two white faces. This suggests that CP effects are enhanced when continua run between two distinctly represented individual stimuli, and are further enhanced when those individuals are, in turn, members of different stimulus categories.     

DNA-sequence patenting: National Society of Genetic Counselors (NSGC) position paper

In November 2000, the Genetic Services Committee of the National Society of Genetic Counselors (NSGC) convened a working group to draft a position paper on patenting of DNA-sequences. The mandate of the group was to produce general position statements that support the perspective and needs of consumers of DNA-based genetic tests and therapies (our patients and their families) and participants in DNA-based genetic research. After review and discussion of the literature on DNA-sequence patenting issues, the working group drafted position statement points that support current United States Patent and Trademark Office (USPTO) guidelines; broad licensing of DNA-sequence patents; nonenforcement of DNA-sequence patents in noncommercial research; reasonable royalty rates; an informed consent process for research participants that discloses whether they can share in any financial rewards relating to the project; the development of guidelines for licensing of DNA-sequence patents; and the establishment of oversight organizations to monitor licensing of DNA-sequence patents. These position statements were approved by the NSGC Board of Directors in the fall of 2001.     

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.     

The behavioral complications of pallidal stimulation: a case report

We report a case of recurrent manic episodes associated with chronic deep brain stimulation (DBS) targeting globus pallidus (GP) in the treatment of Parkinson's disease (PD). Cardinal PD symptoms and dyskinesia improved with DBS, and neuropsychological testing found improvements in visuospatial measures associated with left DBS and in verbal memory with right DBS when compared to the patient's preoperative baseline. Under conditions of right, left, and bilateral DBS, the patient experienced bouts of mania and hypomania lasting several days at a time. Positron emission tomography (PET) with (15)O-labeled water was performed after his first manic episode under four conditions: no stimulation, right DBS, left DBS, and bilateral DBS. Although no manic switch occurred during the course of the PET study, all three DBS conditions were associated with decreases in regional flow in the left parahippocampus and hippocampus and right mid-cingulate gyrus. Increases in flow in left inferior frontal area, bilateral insula, dorsolateral prefrontal cortex, and cuneus were common to all DBS conditions. GP stimulation in PD may be associated with behavioral and cognitive effects. Distributed blood flow changes observed with pallidal DBS support a role for the pallidum in cognition and affective regulation.