Development of E-Info Geneca: A Website Providing Computer-Tailored Information and Question Prompt Prior to Breast Cancer Genetic Counseling

This article describes the stepwise development of the website ‘E-info gene^ca’. The website provides counselees in breast cancer genetic counseling with computer-tailored information and a question prompt prior to their first consultation. Counselees generally do not know what to expect from genetic counseling and they tend to have a passive role, receiving large amounts of relatively standard information. Using the “intervention mapping approach,” we developed E-info gene^ca aiming to enhance counselees’ realistic expectations and participation during genetic counseling. The information on this website is tailored to counselees’ individual situation (e.g., the counselee’s age and cancer history). The website covers the topics of the genetic counseling process, breast cancer risk, meaning of being a carrier of a cancer gene mutation, emotional consequences and hereditary breast cancer. Finally, a question prompt encourages counselees to prepare questions for their genetic counseling visit.     

The Utility of Genetic Counseling Prior to Offering First Trimester Screening Options

In order to evaluate the utility of genetic counseling at the time of first trimester screening in patients with no previously identified genetic concerns, we reviewed family history data for 700 women seen for genetic counseling in Utah during 2005-2006. The mean maternal age was 35 years (Range: 16–47 years). The majority of patients seen were non-Jewish Caucasians (90.8%, 634/700). A three-generation pedigree was obtained from each woman by one of two certified genetic counselors and subsequently classified as “negative” (no birth defects/genetic disorders); “positive” (birth defect or genetic condition with a minimal/low risk of recurrence; additional evaluation/genetic testing during pregnancy not indicated); or “significant” (birth defect or genetic condition with an increased risk of recurrence; additional evaluation/genetic testing during the pregnancy indicated). About 72% (501/700) of the histories were negative, 19% (134/700) were positive, and about 9% (65/700) were significant. Among patients with significant family histories, 66% (n = 43) were women less than 35 years of age. We conclude that assessing a patient’s family history at the time of first trimester serum screening is a valuable resource for pregnancy management.     

“What is this Genetics,Anyway?” Understandings of Genetics,Illness Causality and Inheritance Among British Pakistani Users of Genetic Services

Misconceptions about basic genetic concepts and inheritance patterns may be widespread in the general population. This paper investigates understandings of genetics, illness causality and inheritance among British Pakistanis referred to a UK genetics clinic. During participant observation of genetics clinic consultations and semi-structured interviews in Urdu or English in respondents’ homes, we identified an array of environmental, behavioral and spiritual understandings of the causes of medical and intellectual problems. Misconceptions about the location of genetic information in the body and of genetic mechanisms of inheritance were common, reflected the range of everyday theories observed for White British patients and included the belief that a child receives more genetic material from the father than the mother. Despite some participants’ conversational use of genetic terminology, some patients had assimilated genetic information in ways that conflict with genetic theory with potentially serious clinical consequences. Additionally, skepticism of genetic theories of illness reflected a rejection of a dominant discourse of genetic risk that stigmatizes cousin marriages. Patients referred to genetics clinics may not easily surrender their lay or personal theories about the causes of their own or their child’s condition and their understandings of genetic risk. Genetic counselors may need to identify, work with and at times challenge patients’ understandings of illness causality and inheritance.     

Susan Myers-Shirk’s <Emphasis Type="Italic">Helping the Good Shepherd</Emphasis>: A Review Essay

In this essay, I review a recent book that deals with the history of pastoral counseling. I offer an overview of the book, some criticism of the book, and a discussion of how this book relates to my own work. I argue that what Susan Myers-Shirk has identified as a “liberal moral sensibility” among pastoral counselors seems to have certain affinities with Peter Homans’s “mourning religion” thesis. I suggest that this thesis can shed light on the divide between liberal and conservative pastoral counselors, a divide that Myers-Shirk identifies, and that this thesis can build on Myers-Shirk’s historical work by providing a rubric for understanding the relationship between private experience and public theory among liberal pastoral counselors. I also suggest that Myers-Shirk should write a sequel to this book.     

Expanding Roles: A Survey of Public Health Genetic Counselors

According to the 2008 National Society of Genetic Counselors (NSGC) Professional Status Survey (PSS), 31 genetic counselor respondents reported spending at least 50% of their time in the area of public health. The NSGC Public Health Special Interest Group (PHSIG) had 49 dues-paying members in 2009. The purpose of this study was to identify the work settings and public health activities in which genetic counselors participate. A novel online survey was disseminated over the NSGC PHSIG Listserv. Forty-one percent (n = 13) of public health genetic counselor respondents worked in a university medical system, while 53% (n = 17) were grant-funded and held a non-clinical appointment. The most common public health activities included educating healthcare professionals (82%) and community members (61%), research (55%), grant writing (55%) and grant administration (36%). Most respondents (82%) reported learning certain public health skills outside of their genetic counseling training programs. Differences in work settings were found, with a significantly greater percentage of public health genetic counselors working in government agencies. Genetic counselors have opportunities to become involved in public health activities as the scope of public health genetics grows. Furthermore, genetic counseling competencies are compatible with the Institute of Medicine’s “10 Essential Public Health Services.” The NSGC and genetic counseling training programs are encouraged to offer more public health learning opportunities for genetic counselors and genetic counseling students interested in this specialty area.     

A Balancing Act—Telehealth Cancer Genetics and Practitioners’ Experiences of a Triadic Consultation

Telehealth is increasingly used for outreach service in cancer genetic counseling; however what occurs during the consultation and the roles practitioners adopt is largely unknown. Fifteen practitioners participated in semi-structured interviews that explored their roles within telehealth, compared to face-to-face consultations, and the relationship between practitioners during telehealth. As they were not physically present with the patient, most participants felt that telehealth altered the genetic clinician’s role to one of a ‘visiting specialist’. Genetic counselors described undertaking multiple roles during the telehealth process. Two models of interaction were observed. The medical model reduced the interaction to a dyadic consultation by having the genetic counselor off-screen and included minimal clinician meetings and supervision. The triadic co-facilitation model incorporated a high level of information exchange, counselor autonomy and included the counselor onscreen. The co-facilitation model offers a useful framework for telehealth genetic counselling, offering complementary roles between practitioners and efficient service delivery.     

Response to Commentators of “A Critique of Positive Responsibility”

It has been claimed that (1) computer professionals should be held responsible for an undisclosed list of “undesirable events” associated with their work and (2) most if not all computer disasters can be avoided by truly understanding responsibility. Commentators of “A Critique of Positive Responsibility in Computing” argue that this is not Donald Gotterbarn’s view (Gotterbarn, JSEE 14(2):235–239, 2008) but that a critique of the view nevertheless raises significant moral issues within computing such as the ethical goals of a computing profession, the appropriate ethical stance toward bugs, and the public good with respect to computing (Miller, JSEE 14(2):245–249, 2008). Commentators also argue that “A Critique”’s “profitable misreading” demonstrates the “moral ecology” of organizations “dedicated narrowly to financial success” and that other “moral ecologies” that are customer or quality driven can be shown to be more important or preeminent (Huff, JSEE 14(2):241–244, 2008). It is argued here that (1) the hyper-inflated reading of Gotterbarn’s and Ladd’s views on positive responsibility persists despite Gotterbarn’s explicit rejection of it, and that (2) such a reading of positive responsibility cannot be placed within a single moral ecology, nor can a single moral ecology be shown to be any more important or preeminent than others. Stieb, J. A. (2008). A critique of positive responsibility in computing. Science and Engineering Ethics, 14(2), 219–233.     

Psychophysiological components of imagery

McGuigan’s neuromuscular model of information processing (1978a, 1978b, and 1989) was investigated by electrically recording eye movements (electro-oculograms), covert lip and preferred arm responses (electromyograms), and electroencephalograms. This model predicts that codes are generated as the lips are uniquely activated when processing words beginning with bilabial sounds like “p” or “b,” as is the right arm to words like “pencil” that refer to its use. Twelve adult female participants selected for their high imagery ratings were asked to form images to three orally presented linguistic stimuli: the letter “p,” the words “pencil” and “pasture,” and to a control stimulus, the words “go blank.” The following findings were significant beyond the 0.05 level: an increased covert lip response only to the letter “p,” increased vertical eye activity to “p” and to the word “pencil,” right arm response only to the word “pencil,” and a decreased percentage of alpha waves from the right 02 lead only to the word “pasture.” Since these covert responses uniquely occurred during specific imagery processes, it is inferred that they are components of neuromuscular circuits that function in accord with the model of information processing tested.     

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.”     

Care of the Self and Patient Participation in Genetic Discourse: A Foucauldian Reading of the Surgeon General's “My Family Health Portrait” Program

Critics of genetic discourse are concerned that deterministic and discriminatory views of genetics are increasingly becoming adopted. These views argue that current genetic discourse becomes a source of power whereby powerful institutions harm people with so-called “bad” genes. This essay argues that current analyses of the power of genetics discourse are grounded in an improper reading that disempowers patients. Deploying Michel Foucault's concept “care of the self,” this essay claims that genetics discourse is better understood as a way that patients take on power through rhetoric rather than a force that has power over patients. Through a close reading of the “My Family Health Portrait” program, this paper argues that patients experience a process of “subjection” wherein they become agents of and objects of genetics discourse both. This alternative mode of analyzing the power of genetics discourse has implications for our collective understanding of the operations of the care of the self and the uses of genetic information that we propose.     

A Comparison of Dewey’s and Russell’s Influences on China

John Dewey and Bertrand Russell visited China at around the same time in 1920. Both profoundly influenced China during the great transition period of this country. This article will focus on the differences between the two great figures that influenced China in the 1920s. This comparison will examine the following five aspects: 1. Deweyanization vs. Russellization; 2. Dewey’s “Populism” vs. Russell’s “Aristocraticism”; 3. Dewey’s “Syntheticalism” vs. Russell’s “Analyticalism”; 4. Dewey’s “Realism” vs. Russell’s “Romanticism”; 5. Dewey’s “Conservatism” vs. Russell’s “Radicalism”. This examination will highlight that, although their visit left indelible impressions among Chinese intellecturals, for the radical Marx–Leninists, any Western philosophy and socio-political theories, including Dewey’s and Russell’s, were prejudicial, outworn, and even counterrevolutionary. Soon “Marxi–Leninization” was gradually substituted for “Deweyanization” and “Russellization.”     

What does the public think of placebo use? The Canadian experience

Part of the National Placebo Initiative in Canada included public consultations, based on the belief that the views of the public should inform Canadian policy development on what constitutes appropriate placebo use. Public consultations took place nationally in 2003. A deliberative dialogue approach was used, or a structured discussion format designed to facilitate the consideration of complex issues and build consensus. The placebo debate was characterized as having 3 distinct approaches and each were explored. The first approach “Maximize Patient Protection” identified the need for experts to determine appropriate placebo use and that placebos should only be allowed under very restricted conditions. The second approach “Maximize Medical Knowledge” identified that placebos give essential information about the safety and efficacy of new drugs, and are appropriate when the rights, safety and well-being of research participants are ensured. The third approach “Maximize Patient Autonomy” identified that the current system of regulating placebo use is paternalistic and that patients should be able to define what is in their best interests and have more leeway to determine for themselves if they wish to participate in a placebo-controlled trial. Advantages and disadvantages of each approach were considered and feedback on what constitutes appropriate placebo use was sought. The major findings were that: PCTs were considered a valuable and acceptable part of advancing medical knowledge; research using placebos must be valid and justifiable; a patient-centred approach needs to be fostered; patient autonomy (choice) should be a first consideration and take clear precedence in trials of low to medium risk; patient protection (or health) may need to “trump” patient autonomy at higher levels of risk and/or patient vulnerability; placebos are not a violation of the duty of care as duty of care is best met by identifying a choice for patients, whenever a choice is available. These consultations clearly were not designed to produce conclusive evidence, but rather to provide some useful insights into what the public may think about placebo use; additional studies are indicated. Funding for the public consultations was provided by Health Canada and the Canadian Institutes of Health Research. 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.     

Focusing on Patient Needs and Preferences May Improve Genetic Counseling for Colorectal Cancer

During cancer genetic counseling, different items which counselors consider important are discussed. However, relatively little empirical evidence exists regarding the needs and preferences of counselees. In this study needs and preferences were assessed from counselees with a personal and/or family history of colorectal cancer (CRC), who were referred for genetic counseling regarding CRC. They received a slightly modified version of the QUOTE-GENE^ca questionnaire prior to their first visit to the Hereditary Cancer Clinic. Response rate was 60 % (48/80 participants). Counselees rated the importance of 45 items assessing their needs and preferences regarding the content and process of genetic counseling. Participants rated the items regarding discussion of information about their familial CRC risk (100 %) and preventive options (98 %) as important or very important. Fewer participants rated items concerning general information on genetics as important. Sensitive communication during counseling was considered very important by a large percentage of counselees. Generally, no major differences were seen between participants in relation to individual characteristics. Our data suggest that focusing on familial CRC risk and surveillance options, in combination with sensitive communication may lead to better satisfaction with genetic counseling.     

Decisions About Testing and Termination of Pregnancy for Different Fetal Conditions: A Qualitative Study of European White and Pakistani Mothers of Affected Children

The aim of this study is to explore reasons for and against prenatal testing and termination for a range of conditions in women from two different ethnic backgrounds. A total of 19 Pakistani and European women in West Yorkshire, UK, who either had a child with a genetic condition or had terminated a pregnancy for one, completed a questionnaire about their attitudes regarding prenatal testing and termination for 30 different fetal conditions and were interviewed about their reasons for their responses. There were more similarities than differences between the Pakistani and European white women. The most important factor in most women’s decisions about termination of pregnancy was their perception of the quality of the life of a child with the genetic condition, in particular, whether the child would be “suffering.” This was described as either physical suffering, as a result of medical treatment, or as emotional suffering, as a result of psychological and/or social factors. These findings highlight the need for detailed information about the potential quality of life for the child and the child’s family to enable parents to make informed choices, particularly the extent to which the child is likely to suffer, the nature of such potential “suffering” and the extent to which the child could lead a “normal” life. The findings also challenge stereotypes about cultural differences in attitudes about termination of pregnancy.     

Meaning(fullness) Without Metaphysics: Another Look at Hume’s “Meaning Empiricism”

Although Hume has no developed semantic theory, in the heyday of analytic philosophy he was criticized for his “meaning empiricism,” which supposedly committed him to a private world of ideas, led him to champion a genetic account of meaning instead of an analytic one, and confused “impressions” with “perceptions of an objective realm.” But another look at Hume’s “meaning empiricism” reveals that his criterion for cognitive content, the cornerstone both of his resolutely anti-metaphysical stance and his naturalistic “science of human nature,” provides the basis for a successful response to his critics. Central to his program for reforming philosophy, Hume’s use of the criterion has two distinct aspects: a critical or negative aspect, which assesses the content of the central notions of metaphysical theories to demonstrate their unintelligibility; and a constructive or positive aspect, which accurately determines the cognitive content of terms and ideas.     

Literature as a Meaningful Life Laboratory

Meaningful life is emotionally marked off. That’s the general point that Johansen (IPBS: Integrative Psychological & Behavioral Science 44, 2010) makes which is of great importance. Fictional abstractions use to make the point even more salient. As an example I’ve examined Borges’ famous fiction story. Along with the examples of Johansen it provides an informative case of exploring symbolic mechanisms which bind meaning with emotions. This particular mode of analysis draws forth poetry and literature in general to be treated as a “meaningful life laboratory”. Ways of explanation of emotional effect the art exercises on people, which had been disclosed within this laboratory, however, constitute a significant distinction in terms that I have designated as “referential” and “substantive”. The former appeals to something that has already been charged with emotional power, whereas the latter comes to effect by means of special symbolic mechanisms creating the emotional experience within the situation. Johansen, who tends to explain emotions exerted by the art without leaving the semiotic perspective, is drawn towards the “referential” type of explanation. Based upon discussions in theory of metaphor and Robert Witkin’s sociological theory of arts it is demonstrated an insufficient of “referential” explanation. To overcome a monopoly of “referential” explanation of emotional engagement, in particular, in literature, means to break away from the way of reasoning, stating endless references to “something else”, presupposing the existence of something already significant and therefore sharing its effects.     

Prospects for a Cultural-historical Psychology of Intelligence

The ideas of cultural-historical psychology have led to a new understanding of the human psyche as developing in the process of the subject acting in social and historical contexts. Such a “non-classical” reinterpretation of psychological concepts should be based on a theoretical and philosophical framework in order to explain genetic sources of these concepts. For this purpose, Il’enkov’s philosophy is of great significance. This is illustrated by discussing a possible cultural-historical understanding of the concept of intelligence. “If we enrich Vygotsky’s ideas with Il’enkov’s basic postulates, modern psychology and pedagogy will take a considerable step forward in study of the genesis and development of consciousness and of the individual subject of activity” (Davydov 1998, 92).     

The Stigmatising Implications of Presenting Schizophrenia as a Genetic Disease

This study aimed to investigate the hypothesis that belief in a genetic aetiology of schizophrenia will increase the stigma associated with the disorder. Levels of five potentially stigmatising attitudes were compared in two groups of participants who had read a vignette describing an individual who has schizophrenia. In one group the disorder was explained as being caused by ‘genetic’ factors, and in the other by ‘environmental’ factors. This study found that three of the five potentially stigmatising attitudes measured were increased when participants read a vignette with a genetic causation rather than an environmental causation. Firstly, genetic attributions increased levels of associative stigma towards close relatives (p < 0.001). Secondly, participants viewed recovery as less likely when genetic factors were implicated as causative (p < 0.001). Finally, there was also an increased perception of the character’s “dangerousness” when the condition was explained by genetic factors (p < 0.05). Contrary to previous research was the finding that perceived aetiology had no effect on participant’s desire for social distance from an affected individual. Neither did perceived aetiology influence beliefs about moral accountability. The implications of these findings suggest that genetic counsellors and other health professionals, who are providing genetic information to those affected by schizophrenia should be aware of the possibility that a genetic explanation of schizophrenia could increase potentially stigmatising attitudes towards their clients and their clients’ families. It is also possible that individuals with a diagnosis of schizophrenia may themselves form deterministic interpretations of the genetic information they receive and subsequently be less likely to adopt behavioural advice or adhere to treatment. Counsellors and health professionals should strive to present information in a balanced manner, ensuring recipients understand the multi-factorial causes of the disease.