Whose Gene Is It? A Case Discussion About Familial Conflict over Genetic Testing for Breast Cancer

A multidisciplinary group of genetic and other professionals discuss a complex case of familial conflict over access to genetic information. One twin wishes to know the results of her deceased mother's tests for BRCA1 mutations; a second twin objects to researchers making this information available. As the case discussion unfolds, the apparent facts of this case are called into question and the lines of ethical certainty become less clear.     

Knowledge of Breast Cancer Genetics Among Breast Cancer Patients and First-Degree Relatives of Affected Individuals

The cloning of BRCA1, a susceptibility gene for inherited breast cancer, has made genetic screening possible for individuals and families whose medical histories are suggestive of an inherited predisposition to breast cancer. To date, few systematic attempts have been made to determine the level of knowledge about breast cancer genetics among women who are likely to seek BRCA1 screening when it becomes widely available. The present study attempted to assess the general knowledge about BRCA1 mutations in two groups: (1) first-degree relatives (FDRs) of breast cancer patients; and (2) women with a previous diagnosis of breast cancer. A self-administered, thirty-item questionnaire was developed through a pilot study. Ten of the items were objective, factual questions about breast cancer genetics. Responses to these questions were used to generate an overall knowledge score for each respondent. The study population was moderately knowledgeable about breast cancer genetics, with an average score of 5.35 out of 10. Counselors should not underestimate the importance of evaluating each counselee's existing knowledge about breast cancer, which can affect the provision and reception of genetic information. In particular, specific areas of knowledge that may be confusing or misunderstood were identified and these topics are discussed in detail.     

Natural ways are better: Adolescents and the ‘anti-obesity’ gene

Empirical research with young people in Finland, Germany, Spain and Britain was carried out as part of the BIOCULT project funded by the European Union. The project focused on their attitudes to biotechnology and, in particular, the formation of arguments about risk and safety. This paper looks at the responses of 14–18 year olds to a story about the so called anti-obesity gene, in the form of advice to a friend who is taking it. The majority advised against taking it with some differences by gender and country. Most reservations were on grounds of safety and the feeling that ‘natural’ ways to lose weight are better: A minority questioned the idea of striving for a ‘perfect’ body. The types of arguments used by the young people reveal underlying perspectives on the place of human beings in the world and whether they have a right to manipulate nature and their own bodies. Marie Levitt is a sociologist with research interests in attitudes and values in relation to biotechnology, health and religion.     

The specific action of different personality risk factors on cancer of the breast, cervix, corpus uteri and other types of cancer: A prospective investigation

We report the results of a prospective study of a random sample of 1353 elderly but healthy men and women who were followed up for a period of 10 yr, when mortality and cause of death were ascertained. Overall results have been reported elsewhere for mortality from cancer, coronary heart disease and other causes; here we are concerned with the personality factors predicting breast cancer, cervical cancer, cancer of the corpus uteri specifically, as well as other types of cancer in women. Ten specific hypotheses were tested, using specially constructed questionnaires for the purpose, and for most of these statistically significant support was obtained. The results justify belief that specific types of cancer may be related to specific stress/personality factors.     

Apocalyptic Argument and the Anticipation of Catastrophe: the Prediction of Risk and the Risks of Prediction

This essay proposes to extend the model of apocalyptic argument developedin my recent book Arguing the Apocalypse (OLeary, 1994) beyond the study ofreligious discourse, by applying this model to the debate over awell-publicized earthquake prediction that caused a widespread panic in theAmerican midwest in December, 1990. The first section of the essay willsummarize the essential elements of apocalyptic argument as I have earlierdefined them; the second section will apply the model to the case of the NewMadrid, Missouri, earthquake prediction, in order to demonstrate thatcertain patterns of reasoning characteristic of religious apocalyptic arepresent in the discourse over an anticipated local disaster. My ultimatepurpose is to show that predictions of global and local catastrophe mayserve as extreme cases that will illuminate the dynamics of predictiveargument in general. Thus my argument will seek to undercut Daniel Bellsdistinction between prophecy and prediction (Bell, 1973) by establishingthat these discourses share identifiable formal and substantivecharacteristics, and depend for their rhetorical effect on anxiety, hope,far, and excitement as modes of temporal anticipation.     

ACHIEVING AND MAINTAINING COMPLIANCE WITH THE KETOGENIC DIET

The ketogenic diet, a treatment for intractable epilepsy, is rarely initiated because it requires strict compliance with a diet that is perceived to be unpalatable. In a case study of a 15-year-old girl with uncontrolled epilepsy, we used a stimulus-choice procedure to assess relative preferences of 33 foods from the diet and to develop two treatments based on Premack's principle. The results of a multielement analysis showed that both treatments increased dietary compliance. Compliance was maintained with generalization of treatment across settings, and was associated with a 40% reduction in seizures.     

Self-control and impulsiveness in children and adults: Effects of food preferences

Experiment 1 used 6 preschool boys and Experiment 2 used 6 adult women to explore the effects of food preference on humans' choice in self-control paradigms. The boys showed a higher proportion of responses for more delayed, larger reinforcers (a measure of self-control) when those choices resulted in receipt of the most preferred food compared to when those choices resulted in the least preferred food. Further, the boys chose the less delayed, smaller reinforcers significantly more often when only those choices, as opposed to both choices, resulted in the most preferred food. Conversely, they chose the more delayed, larger reinforcers significantly more often when only those choices, as opposed to both choices, resulted in the most preferred food. Finally, the women demonstrated significantly less sensitivity to reinforcer amount relative to sensitivity to reinforcer delay (another measure of self-control) when they had a higher preference for the juice received as the less delayed, smaller reinforcer than for the juice received as the more delayed, larger reinforcer. Together, the results show that subjects' food preferences can influence self-control for food reinforcers.     

Risk perception and the location of a repository for spent nuclear fuel

This study investigates lay people's reactions to a repository for nuclear waste. Risk perception is seen as a complex concept, comprising both affective and cognitive components. Attitude towards nuclear power and trust in experts and authorities had a substantial impact on risk perception, while personal knowledge about nuclear waste disposal had no effect. Thus, the more positive one's attitude towards nuclear power is and the more trust one has in experts and authorities, the lower one's risk perception is. Also, reactions were expected to vary with distance between the home district and the location of a repository. These variations differed in nature for people with alternative levels of risk judgement. The distance between the home and a repository affected approval of the proposed site. Distance between home and repository also had an effect on risk feelings and somewhat less on beliefs about consequences. Estimated total risk was directly mediated by beliefs about consequences, but even more so by risk feelings. With regard to risk, one can conclude that it is important to make a distinction between an emotional and a cognitive component of risk perception.     

Resistance and adherence to the norms of genetic counseling

Genetic counseling for women of advanced maternal age who are considering prenatal testing continues to be based on a principle of nondirectiveness. We interviewed 11 genetic counseling students and four counselors about how they experience and manage, in practice, the tensions between the ideology of nondirectiveness and the acknowledged reality that one can never be truly nondirective. We found that our respondents creatively resolve this tension—simultaneously resisting and adhering to the values of nondirectiveness and information-giving—in individual and situation-specific ways. This resolution is facilitated by the extent to which information given to counselees is fluid, mobile and context-dependent, but these very features of information also have critical implications for both the norms and the practice of genetic counseling.     

My place,your place,and no place: Behavior settings as a risk factor for HIV-related injection practices of drug users in Baltimore,Maryland

Information is sparse on the social context of illicit drug injection behaviors and their relationship to HIV infection. This study examined relationships between injection settings, injecting with others, and HIV risk behaviors of sharing needles and not cleaning contaminated needles in a sample of 630 inner-city injecting drug users in Baltimore, MD. Through open-ended interviews, five primary settings of injection behavior were identified. These settings included one's own, friends' and mother's residence, shooting galleries, and semipublic areas. Most participants reported injecting in their own residence (92%) and friends' residence (86%) in the prior 6 months. In a multiple regression analysis, injecting at friends' residence, in shooting galleries, and in semipublic areas and frequency of injecting with others were significantly associated with frequency of sharing uncleaned needles, “slipping” (i.e., failure to disinfect shared needles), and not always cleaning used needles before injecting. Results suggest that interventions may benefit from targeting settings as well as behaviors to reduce the spread of HIV. This research was supported by grants DA04334, DA05911, DA06313, and DA08985 from the National Institute on Drug Abuse.