Perceptions of the Concept of Mutation among Family Members of Patients Receiving Outpatient Genetic Services and University Students

Our objectives were to investigate: (1) relationships between perceptions of various terms regarding mutation and the depth of knowledge regarding mutation among family members of patients receiving genetic outpatient services, and (2) differences in perceptions of the term “gene mutation” for family members versus university students. Fifty-eight family members and 178 university students responded to two questionnaires: Impressions regarding the term, and Knowledge about the concept of mutation. Factor analyses were conducted to determine the factor structure of ratings of the terms, and two-way analyses of variance [(1)Term, (2)Group × Knowledge] were conducted to examine differences in perceptions of the terms as measured by scores for each extracted factor. Family members had a significantly more negative perception of the term “gene mutation” than “gene change” and a less negative perception of the term “gene mutation” than “gene lesion”; they had significantly more negative perceptions of the term “gene mutation” than did university students.     

Clinical Use of the Surgeon General’s “My Family Health Portrait” (MFHP) Tool: Opinions of Future Health Care Providers

This study examined medical students’ and house officers’ opinions about the Surgeon General’s “My Family Health Portrait” (MFHP) tool. Participants used the tool and were surveyed about tool mechanics, potential clinical uses, and barriers. None of the 97 participants had previously used this tool. The average time to enter a family history was 15 min (range 3 to 45 min). Participants agreed or strongly agreed that the MFHP tool is understandable (98%), easy to use (93%), and suitable for general public use (84%). Sixty-seven percent would encourage their patients to use the tool; 39% would ensure staff assistance. Participants would use the tool to identify patients at increased risk for disease (86%), record family history in the medical chart (84%), recommend preventive health behaviors (80%), and refer to genetics services (72%). Concerns about use of the tool included patient access, information accuracy, technical challenges, and the need for physician education on interpreting family history information.     

Speaking truth to power: Empowerment ideology as social intervention and policy

The popularity, and subsequent ambiguity, in the use of the term “empowerment” has created an even greater need for reassessment in the applied context than in the theory and research literatures. This paper outlines some of the areas of community, organizational, and societal level social intervention and policy ostensibly based on the concept of empowerment. These include neighborhood voluntary associations (for environmental protection, community crime prevention, etc.), self-help groups, competence-building primary prevention, organizational management, health care and educational reforms, and national and international community service and community development policies. Issues in applying social research to community organizations and to legislative and administrative policy making are reviewed. Ten recommendations are offered, including the value of a dialectical analysis, for helping researchers and policy makers/administrators make more effective use of empowerment theory and research. Humpty Dumpty: “When I use a word, it means just what I choose it to mean neither more nor less.” King of Hearts: “If there's no meaning in it, that saves a world of trouble, you know, as we needn't try to find any.”—Lewis Carroll Portions of this paper were first presented in the program “Empowerment Theory, Research and policy” at the Biennial Conference on Community Research and Action, Williamsburg, Virginia, June 18, 1993. The author thanks Barbara B. Brown, Jo Ann Lippe, Ken Maton and his students, David V. Perkins, Marc A. Zimmerman, and the anonymous reviewers for their very helpful comments on earlier drafts.     

Gateways—just as important as standards: How the internet won the “religious war” over standards in Scandinavia

This article concerns the Nordunet project and its “plug.” It is a history about how the Internet “won” the “religious war” about computer communication protocol standards in Scandinavia. It teaches us important lessons about how the Nordic countries (except Denmark) became the leading ones in the adoption and use of the Internet. On a more general level this story also teaches us an important lesson about the importance of gateways in the design and establishment of large scale computer networks and information infrastructures. It is a universal truth that the development of such technologies requires standards. And that gateways are equally important. The main conclusion drawn is that what matters in the development of such technologies is to combine and balance the use of gateways and standards in a proper way. Originally trained as a computer scientist his research focuses mainly on the interplay between social and technical issues in the development and use of large-scale information systems and infrastructures—including their standards. He has worked most of his professional career within applied research institutions and industry and before moving into academia in 1997.     

A Spiritual Person

When asked in a questionnaire to describe a spiritual person, William James named one instead: Phillips Brooks. This article focuses on Brooks—his life, his sermons, and his poem “O Little Town of Bethlehem”—to make the case that he exemplified James’ view of spirituality as “a susceptibility to ideals, but with a certain freedom to indulge in imagination about them.” It also supports Belzen’s (Mental Health, Religion & Culture, 12:205–222, 2009) view that there is no spirituality in general but only individual manifestations of it, a point that James’ nomination of Brooks implicitly supports.     

Interactive Genetic Counseling Role-Play: A Novel Educational Strategy for Family Physicians

Background Family physicians (FPs) are increasingly involved in delivering genetic services. Familiarization with aspects of genetic counseling may enable FPs to help patients make informed choices. Purpose Exploration of interactive role-play as a means to raise FPs’ awareness of the process and content of genetic counseling. Methods FPs attending two large Canadian family medicine conferences in 2005 were eligible—93 participated. FPs discussed a case during a one-on-one session with a genetic counselor. Evaluation involved pre and post intervention questionnaires Results FPs’ baseline genetic knowledge was self-rated as uniformly poor. Baseline confidence was highest in eliciting family history and providing psychosocial support and lowest in discussing risks/benefits of genetic testing and counseling process. Post-intervention, 80% of FPs had better appreciation of family history and 97% indicated this was an effective learning experience. Conclusions Role-play with FPs is effective in raising awareness of the process and content of genetic counseling and may be applied to other health disciplines. This research was funded by: The Canadian Institutes of Health Research (CIHR) Institute of Genetics, The Genetics Education Project (funded by the Ontario Women’s Health Council), and GeneSens (funded by a CIHR Interdisciplinary Capacity Enhancement Team Grant).     

Physico-mathematics and the search for causes in Descartes’ optics—1619–1637

One of the chief concerns of the young Descartes was with what he, and others, termed “physico-mathematics”. This signalled a questioning of the Scholastic Aristotelian view of the mixed mathematical sciences as subordinate to natural philosophy, non explanatory, and merely instrumental. Somehow, the mixed mathematical disciplines were now to become intimately related to natural philosophical issues of matter and cause. That is, they were to become more ’physicalised’, more closely intertwined with natural philosophising, regardless of which species of natural philosophy one advocated. A curious, short-lived yet portentous epistemological conceit lay at the core of Descartes’ physico-mathematics—the belief that solid geometrical results in the mixed mathematical sciences literally offered windows into the realm of natural philosophical causation—that in such cases one could literally “see the causes”. Optics took pride of place within Descartes’ physico-mathematics project, because he believed it offered unique possibilities for the successful vision of causes. This paper traces Descartes’ early physico-mathematical program in optics, its origins, pitfalls and its successes, which were crucial in providing Descartes resources for his later work in systematic natural philosophy. It explores how Descartes exploited his discovery of the law of refraction of light—an achievement well within the bounds of traditional mixed mathematical optics—in order to derive—in the manner of physico-mathematics—causal knowledge about light, and indeed insight about the principles of a “dynamics” that would provide the laws of corpuscular motion and tendency to motion in his natural philosophical system.     

Women with <Emphasis Type="Italic">BRCA1</Emphasis> or <Emphasis Type="Italic">BRCA2</Emphasis> Mutations Renegotiating a Post-Prophylactic Mastectomy Identity: Self-Image and Self-Disclosure.

The Facing Our Risk of Cancer Empowered (FORCE) website is devoted to women at risk for hereditary breast and ovarian cancers. One of the most frequently discussed topics on the archived messaged board has been prophylactic mastectomy (PM) for women with a BRCA1/2 mutation. We reviewed the messages, over a 4 year period, of 21 high risk women and their “conversational” partners who originally posted on a thread about genetic testing, genetic counseling and family history. We used a qualitative research inductive process involving close reading, coding and identification of recurrent patterns, relationships and processes in the data. The women sought emotional support, specific experiential knowledge and information from each other. They frequently found revealing their post PM status problematic because of possible negative reactions and adopted self-protective strategies of evasion and concealment outside of their web-based community. The FORCE message board was considered to be a safe place in which the women could be truthful about their choices and feelings. Results are discussed in terms of Goffman’s concepts “stigma” and “disclosure” and Charmaz’s concepts “interruptions,” “intrusions” and a “dreaded future.”     

A Bilingual “Neighborhood Club”: Intervening with Children Exposed to Urban Violence

Mental health practitioners have offered relatively little in response to the pervasive community violence faced by many children living in impoverished neighborhoods. The “neighborhood club” is a school-based, short-term, support group designed to assist children with the psychological impact of exposure to community violence. Ten “neighborhood clubs” were conducted in two public elementary schools in Detroit, Michigan. This paper reviews the implementation of a bilingual “neighborhood club,” undertaken to better serve the Spanish-speaking Latino students in a school community. We discuss many of the rewards and challenges of conducting a bilingual, multicultural support group for children and conclude that a bilingual support group provides all children with a model that validates ethnic and cultural diversity while also building empathic bonds based on mutually-reinforcing, common experiences.     

Reasoning about the future: Doom and Beauty

According to the Doomsday Argument we have to rethink the probabilities we assign to a soon or not so soon extinction of mankind when we realize that we are living now, rather early in the history of mankind. Sleeping Beauty finds herself in a similar predicament: on learning the date of her first awakening, she is asked to re-evaluate the probabilities of her two possible future scenarios. In connection with Doom, I argue that it is wrong to assume that our ordinary probability judgements do not already reflect our place in history: we justify the predictive use we make of the probabilities yielded by science (or other sources of information) by our knowledge of the fact that we live now, a certain time before the possible occurrence of the events the probabilities refer to. Our degrees of belief should change drastically when we forget the date—importantly, this follows without invoking the “Self Indication Assumption”. Subsequent conditionalization on information about which year it is cancels this probability shift again. The Doomsday Argument is about such probability shifts, but tells us nothing about the concrete values of the probabilities—for these, experience provides the only basis. Essentially the same analysis applies to the Sleeping Beauty problem. I argue that Sleeping Beauty “thirders” should be committed to thinking that the Doomsday Argument is ineffective; whereas “halfers” should agree that doom is imminent—but they are wrong.     

The Medical Offset Effect: Patterns in Outpatient Services Reduction for High Utilizers of Health Care

Psychosocial intervention has been found to be related to subsequent reductions in health care use. Studies generally measure this “offset effect” by combining medical use categories into one outcome variable, such as outpatient doctor visits. However, using a general outcome variable may obscure more specific patterns of reduction. In an effort to identify potential “targets” for mental health intervention, outpatient care for health screening, illness visits, laboratory/X-ray, and urgent care were considered. Health care use reductions were most prominent for high utilizers and were found across a number of different types of outpatient care. With high utilizers, those who participated in MFT showed significant reductions of 68% for health screening visits, 38% for illness visits, 56% for laboratory/X-ray visits, and 78% for urgent care visits.     

Justice in grades allocation: teachers’ perspective

In this investigation I explore teachers’ perspectives on just grade allocation. The study was carried out among language, math and science teachers in a national sample of Israeli high schools, where teachers were required to weigh a set of considerations that are used in the decision on grade allocation. Findings suggest that (a) a teacher’s decision is based on a weighted combination of multi-principles of allocation, (b) equity by output (students proved academic success) is the ruling consideration, and (c) the weight given to the various considerations differ by teachers’ subject matter expertise. The appeared difference placed science teachers vis-à-vis math and language teachers, unlike the expected humanities (language)—sciences (math and science) dichotomy. Comparison of grading considerations by student capacity suggests that about half of the teachers consider differential grading considerations for “weak” and “strong” students as just, attributing greater weight to academic input (effort) and need for encouragement when grading their “weak” students.     

An empirical test of five prominent explanations for the black–white academic performance gap

The viability of five prominent explanations for the black–white performance gap (“academic engagement,” “cultural capital,” “social capital,” “school quality” and “biased treatment”) is examined using NELS data and a LISREL model that adjusts for clustering of students within schools. Empirical models have typically assessed these factors individually—a practice that probably fosters overestimation of their explanatory power. School quality and biased treatment emerge as the primary explanations for black–white high school test performance differentials. Access to better-quality schools and receipt of more stimulating interpersonal “signals” from gatekeepers ensue from racial (and socioeconomic) privilege. Enhanced test performance in turn ensues from these resources. In essence, the explanations for the racial gap that place more emphasis on what black and white students “bring to” high school (i.e., specific levels of engagement, cultural and social capital), seem less consequential to performance differentials than “what happens to” them when they get there (i.e., quality of education provided, and race-contingent treatment received).     

Poor Little Ritz Boy David “Does” Hawaii or: Lucky Davy Salutes Lucky Lindy

In this article, David Bittner explodes the myth, restated in Brideshead Revisited (1945), that Polynesians are “happy and harmless.” He does so for the same reason that Evelyn Waugh does: “the grim invasion of trader, administrator, missionary, and tourist” has changed all that (p. 174). Touring Hawaii in July of ’09, Bittner was interested to discover some unusual bits of American heritage, but saddened to see how “civilization” and “Americanization” actually seem to have eroded the Hawaiian people’s rights to life, liberty, and the pursuit of happiness. Bittner’s dual religious heritage—Judaism by birth and upbringing and Catholicism by choice in mid-life—has given him the perspective to apply the lessons of Hawaiian history to his own personal issues, particularly forgiveness.     

Introducing the Concepts of “Positions,” “Space,” and “Worlds”: Seeing Human Being and Becoming—and Religion—in New Ways

Theories of psychological development, however diverse, often express common underlying ontological-epistemological commitments shaped by the legacies of Descartes, Newton, and Kant. Three related psychoanalytic concepts—“positions,” “space,” and “worlds”—individually and collectively sketch the contours of a different way of construing human being and becoming—a way that departs from these legacies. Implications for the study of religion of this “different way” are examined.     

“Social Separation” Among Women Under 40 Years of Age Diagnosed with Breast Cancer and Carrying a BRCA1 or BRCA2 Mutation

We conducted an exploratory, qualitative study investigating experiences of women who had developed breast cancer under the age of 40 and who were identified as BRCA1 or BRCA2 mutation carriers. These germline mutation carriers face an increased lifetime risk of a second primary breast cancer and an increased risk for a primary ovarian cancer. Thirteen women who fit this criteria participated in three focus groups conducted at a major cancer center in the UK during Spring 2003. We asked broad, open-ended questions that allowed for a wide range of responses about their cancer and genetic testing experiences, physical and psycho-social concerns, family and partner reactions and their need for social support. The women expressed feelings of devastation, loneliness, feeling different and isolation, ambivalence about having to support family members, worries about partner’s anxiety and depression, and anxiety about talking to family members, especially children. These feelings were stronger after the cancer diagnosis and compounded by the genetic test results that occurred at a later time. We also found that, at least temporarily, the women experienced what we call “social separation”—emotional distance from, or dissonance with groups they interact with or are part of, e.g., family and friends, frequently leading to a reduction in communication or a change in previously unstated, but accepted normal interaction. We concentrate on a few characteristics of social separation—feelings of aloneness, isolation and separation, use of silence and verbal discretion, the relationship between estrangement and kinship interaction and norm disruption, and are looking at social patterns of interpersonal relationships that may occur when risk and illness statuses are new and framing and feeling rules have not as yet been clearly developed due to a cultural lag.     

Applying evidence to support ethical decisions: Is the placebo really powerless?

Using placebos in day-to-day practice is an ethical problem. This paper summarises the available epidemiological evidence to support this difficult decision. Based on these data we propose to differentiate between placebo and “knowledge framing”. While the use of placebo should be confined to experimental settings in clinical trials, knowledge framing — which is only conceptually different from placebo — is a desired, expected and necessary component of any doctor-patient encounter. Examples from daily practice demonstrate both, the need to investigate the effects of knowledge framing and its impact on ethical, medical, economical and legal decisions. An earlier version of this paper was presented at an international conference, “Placebo: Its Action and Place in Health Research Today,” held in Warsaw, Poland on 12–13 April, 2003.     

Predictors of Health Care Use Among Individuals Seeking Therapy for Marital and Family Problems: An Exploratory Study

A number of studies have examined variables associated with health care use. However, no study is known to have considered health care use among people seeking services for marital and family problems. In this study, health care use of persons (N = 110) seeking these services was investigated to determine the strongest psychosocial correlates of health care use. The goal was to identify potential “targets” of clinical intervention that may be driving excessive health care use. “Informational support” and “somatization” were the strongest correlates for the complete sample, with the model explaining 24% of the variance in health care use. For “high users” of health care, “hostility” was the strongest correlate, accounting for more than 36% of the variance in health care use.     

Mental states inside out: Switching costs for emotional and nonemotional sentences that differ in internal and external focus

Mental states—such as thinking, remembering, or feeling angry, happy, or dizzy—have a clear internal component. We feel a certain way when we are in these states. These internal experiences may be simulated when people understand conceptual references to mental states. However, mental states can also be described from an “external” perspective, for example when referring to “smiling.” In those cases, simulation of visible outside features may be more relevant for understanding. In a switching costs paradigm, we presented semantically unrelated sentences describing emotional and nonemotional mental states while manipulating their internal or external focus. The results show that switching costs occur when participants shift between sentences with an internal and an external focus. This suggests that different forms of simulation underlie understanding these sentences. In addition, these effects occurred for emotional and nonemotional mental states, suggesting that they are grounded in a similar way—through the process of simulation.