Disclosure of Genetics Research Results after the Death of the Patient Participant: A Qualitative Study of the Impact on Relatives

When a gene mutation is identified in a research study following the death of the study participant, it is not clear whether such information should be made available to relatives. We report here an evaluation of the impact on relatives of being informed of study results that detected pathogenic BRCA2 mutations in a male relative, now deceased, who had early onset (under the age of 55) prostate cancer. The breast and ovarian cancer risk was unknown to the living relatives. Qualitative analysis of interviews with thirteen relatives indicated that those who had a higher risk perception, resulting from an awareness of cancer family history or experiential knowledge of cancer in their family, tended to adjust more easily to the results. All participants believed that genetics research results of clinical significance should be fed back to relatives. Those who were fully aware of the BRCA2 results and implications for themselves felt they had benefited from the information, irrespective of whether or not they had elected for genetic testing, because of the consequent availability of surveillance programs. Initial anxiety upon learning about the BRCA2 result was alleviated by genetic counselling. Factors influencing those who have not engaged with the information included scepticism related to the relative who attempted to inform them, young age and fear of cancer. Those who had not sought genetic counselling did not attempt further dissemination, and some were not undergoing regular screening. Implications for informed consent in genetics research programs, and the requirement for genetic counselling when research results are disclosed, are discussed. Names have been changed to protect the privacy of study participants.     

父母-儿童共同活动中的互动与儿童的数学学习

本研究运用结构性观察方法对两组4岁儿童与父母在四种活动中的互动进行了分析与比较。一组儿童为书面数符号测查高分者,二组儿童为书面数符号测查低分者。85对父母一儿童对子参加了4个各有15分钟的共同活动,阅读、数学题、纸和积木,并完成一个微型问卷。结果表明,在这些活动中包含了多种数学知识学习和多种以父母为主导的互动策略;两组对子之间在数学事件频次上无差异,但一组父母更多地运用了一些积极策略,二组父母更多地运用了一些消极策略;二组中有更多儿童对互动表现出消极回应和注意力问题。两个组的父母在家中与儿童一起进行诸如阅读和做数学题的共同活动的频次与质量上表现出差异。     

What Do We Tell the Children? Contrasting the Disclosure Choices of Two HD Families Regarding Risk Statusand Predictive Genetic Testing

Above all else, predictive genetic testing provides information. Gaining insight into the psychosocial effects of this information is a primary goal of genetic counseling. For individuals utilizing predictive genetic testing, the acquisition of genetic information requires choices regarding disclosure within the family. This study uses a phenomenological methodology to explore the contrasting choices of two sets of HD parents regarding the disclosure of genetic risk status to their children. Additionally, the children (now adults) discuss their lived experience growing up with contrasting disclosure dynamics, and their current views regarding the use of predictive genetic testing for themselves. The primary finding of this study is that all of the adult children now express preference for early disclosure of genetic risk and an open/supportive communication style regarding HD. This finding has value for clinicians working with HD families who must make decisions regarding disclosure issues related to predictive genetic testing.     

The impact of conflict of interest on trust in science

Conflicts of interest have an erosive effect on trust in science, damaging first the attitude of the public toward scientists and their research, but also weakening the trusting interdependence of scientists. Disclosure is recognized as the key tool for management of conflicts, but rules with sanctions must be improved, new techniques for avoidance of financial conflicts by alternative funding of evaluative research must be sought, and there must be new thinking about institutional conflicts of interest. Our profession is education, and both the public and research professionals of all ages would benefit from greater understanding of how science should and does work. An earlier version of this paper was presented at an International Conference on “Conflict of Interest and its Significance in Science and Medicine” held in Warsaw, Poland on 5–6 April, 2002.     

Conflict of interest and its significance in science and medicine Warsaw,Poland, 5–6 April, 2002

This article summarizes the April 5–6, 2002 conference on Conflict of Interest and Its Significance in Science and Medicine. Several themes are identified and addressed, including the globalization of science, the widespread presence of conflicts, the increased interest and involvement in conflict of interest by a number of organizations, the difference between academic research and research conducted by industry, and the tension between science and medicine. At the heart of the matter lies objectivity in research and the need for transparency to ensure objectivity. Several future activities were discussed, including the need to share specific examples of how conflict has been managed, and the need for behavioral research to provide a sound empirical understanding of the best ways to provide informed consent for research subjects. An earlier version of this paper was presented at an International Conference on “Conflict of Interest and its Significance in Science and Medicine” held in Warsaw, Poland on 5–6 April, 2002.     

Talking about daily emotional events: Psychological well-being moderates the intensity–disclosure link

The intensity of distressing events predicts people’s disclosure of those events at between-person and within-person levels. Depression symptoms seem to attenuate the within-person relation, but past research has not taken a multidimensional view of depression as a moderator. The authors tested whether two constructs related to depression-general psychological well-being and life satisfaction-account for depression’s moderating effects. In a daily diary study, college students (N = 116) rated the intensity of the day’s most unpleasant event and their disclosure of the event each day for 14 days. Participants completed measures of disclosure tendencies, depression symptoms, well-being, and life satisfaction prior to the diary portion of the study. Multilevel modeling analyses revealed moderating effects of disclosure tendencies and depression on the within-person intensity–disclosure relation. However, when psychological well-being and life satisfaction were entered, depression was no longer a significant moderator, but well-being was. Psychological well-being therefore determines the expression of individual differences in the disclosure of daily emotional events.     

The utility of written numerals for preschool children when solving additive problems / La utilidad de los numerales escritos en la resolución de problemas aditivos en niños preescolares

Abstract

The purpose of this study was to determine the impact the presence conventional written numerals has on solving additives problems. We asked 45 children (aged four and five) to solve ten different 5 + 3 type problems by adding tokens that were placed into an opaque box in view of the children. The participants’ performance in counting, recognizing written numerals and solving a number conservation task were assessed. The results suggest that the presence of written numerals facilitated children’s ability to perform additive operations: they were able to use these numerals as a reference to calculate the amount of tokens added, even those who had not shown good quantitative judgement in the number conservation task. Identifying preschoolers’ possible reliance on written numerals could eventually influence formal teaching conditions.     

Should psychotherapists disclose their own psychological problems?

Background: Self‐disclosures by psychotherapists can encompass a wide array of content, including information about the personal life of the psychotherapist. Aim: The goal of this study was to empirically assess reactions to psychotherapists disclosing their own personal problems to clients with similar problems. Methodology: This study explored participants' (n = 155) reactions to vignettes describing psychotherapists as either disclosing or not disclosing their own history of psychological problems to clients presenting with similar problems. Findings: Compared to otherwise identical vignettes featuring psychotherapists who did not self‐disclose, vignettes featuring psychotherapists who self‐disclosed were rated more positively in a variety of ways. Specifically, psychotherapists in the vignettes featuring self‐disclosure were perceived as possessing a higher level of favourable personal qualities and as more likely to establish strong working relationships with clients and achieve success in therapy. Limitations of the method and alternate explanations for the results are considered. Implications: Implications regarding the judicious use by psychotherapists of self‐disclosure regarding their own past psychological problems are discussed.     

AN ANALYST'S UNCERTAINTY AND FEAR

The motivations for choosing psychoanalysis as a profession are many and differ depending on the psychology of the analyst. However, common to most psychoanalysts is the desire to forge a helpful relationship with the individuals with whom they work therapeutically. This article presents an example of what happens when an analyst is confronted by a patient for whom being in a relationship and being helped are intolerable.