A New Definition of Genetic Counseling: National Society of Genetic Counselors’ Task Force Report

The Genetic Counseling Definition Task Force of the National Society of Genetic Counselors (NSGC) developed the following definition of genetic counseling that was approved by the NSGC Board of Directors: Genetic counseling is the process of helping people understand and adapt to the medical, psychological and familial implications of genetic contributions to disease. This process integrates the following: •Interpretation of family and medical histories to assess the chance of disease occurrence or recurrence. •Education about inheritance, testing, management, prevention, resources and research. •Counseling to promote informed choices and adaptation to the risk or condition. The definition was approved after a peer review process with input from the NSGC membership, genetic professional organizations, the NSGC legal counsel, and leaders of several national genetic advocacy groups.     

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.     

Perceived Occupational Concerns and Sensory Processing Patterns of Mothers in a Temporary Assistance for Needy Families (TANF)-to-Work Program

In this study, the authors examine the perceived occupational concerns, typical daily routines, and sensory processing of mothers in a mandatory Temporary Assistance for Needy Families return to work program. Participants were five female members of a transitional work program for single parents with mental illness. The Canadian Occupational Performance Measure and the Adult Sensory Profile were administered. The study found that the most frequently identified occupational problems were leisure and self-care. All participants scored as having at least one atypical sensory processing pattern. Future research should investigate the efficacy of an occupational therapy intervention on this population's return to employment.     

Personhood: Elusive But Not Illusory

Bioethics as a field has been fortunate that its values and concerns have mirrored the values and concerns of society. In light of the September 11th attacks, it is possible that we are witnessing the beginning of a transition in American culture, one fraught with implications for bioethics. The emphasis on autonomy and individual rights may come to be tempered by greater concern over the collective good. Increased emphasis on solidarity over autonomy could greatly alter public response to research abuses aimed at defense from bioterrorism, to privacy of genetic information, and to control of private medical resources to protect the public health.     

Focusing on Educational Outcomes

National education goals, content standards, and national tests are the hot topics of the day in educational reform. Special services personnel eventually will be faced with these issues, and can either be part of the discussion from the beginning, or wait and have to deal with someone else's decisions. In this article, we highlight some recent national and state educational reform activities and their probable implications for students with disabilities. We explain in brief the impetus behind the thrust toward an outcomesbased approach to education, and summarize the response of the National Center on Educational Outcomes for Students with Disabilities to this push. Possible ways in which special service providers can act to influence the focus on outcomes are described.     

A young person's game: Immersion and distancing in bar work

Previous research indicates that bar workers report high levels of alcohol consumption, but the bar work experience itself has been little studied as a means to understand health threats associated with this job role. The subjective experience and meaning of bar work was explored in this study by interviewing current and ex-bar workers from a district in an Irish city that had a high density of bars and busy tourism industry. A total of 12 participants took part in focus groups (FGs) and seven in individual interviews. Four themes were identified in a thematic analysis. The central depiction of bar work was of an initial immersion in an intensive lifestyle characterised by heavy drinking, with subsequent distancing from the extremes of the lifestyle. The participants affiliated strongly with the bar work occupational identity, which included alcohol use in group scenarios for drinking during work, after work and on time off. The bar work lifestyle was most intense in the ‘superpub’ environment, characterised by permissive staff drinking norms and reported stress. Although an important identity, bar work was ultimately a transient role. The findings are considered in relation to research on occupation-specific stress and alcohol use, social identity and developmental needs in young adulthood.     

Improving the Reporting of Health and Psychological Research

A growing body of empirical evidence has consistently demonstrated that much publically and privately funded research is reported in a way that makes it difficult for the findings to be included in evidence syntheses or used by researchers, clinicians, policy makers, and the public. Poorly reported studies thus represent a significant waste of scarce resources. Reporting guidelines are one strategy that has been increasingly used as a method to improve the completeness or usability of primary and secondary research across a broad range of disciplines including psychology. We present a synopsis of two studies investigating the impact of the Transparent Reporting of Evaluation with Nonrandomised Designs statement and factors that affect authors' and journal editors' use of it and other reporting guidelines. We also make recommendations for future guideline development or revisions based on our experiences, provide details of resources for psychologists, and make suggestions for future research and recommendations for improving the transparency of reporting of psychological research.     

Religiously Affiliated Continuum of Care Retirement Communities

SUMMARY

The paper introduces an action research initiative called Spirited Scotland, an embryonic movement seeking to restore spirituality to an appropriate place in health and social care. It locates the initiative in the changing social and spiritual circumstances of post-industrial Scotland and identifies some challenges it faces associated with the prevailing understandings of health, becoming ill, and successful ageing. The paper also considers some policy and practice challenges raised by Spirited Scotland, in terms both of content and process.