Results of an Intervention for Individuals and Families with <Emphasis Type="Italic">BRCA</Emphasis> Mutations: A Model for Providing Medical Updates and Psychosocial Support Following Genetic Testing

Providing medical management updates and long-term support to families with hereditary cancer syndromes in rural areas is a challenge. To address this, we designed a one-day retreat for BRCA1/2 carriers in our region. The retreat included educational updates about medical management, genetic privacy and discrimination, and addressed psychological and family issues. Evaluations completed at the conclusion of the retreat were overwhelmingly positive with requests for a similar event in the future. The impact of this retreat on a variety of health behaviors was assessed. Eligible participants completed questionnaires before and 6 months after the retreat. Questionnaires focused on lifestyle, cancer screening and prevention practices, psychological history and distress, decision-making regarding genetic testing, and family communication issues. For individuals who completed both the pre and post retreat questionnaires, one-half made lifestyle changes and nearly two-thirds increased cancer screening, initiated chemoprevention, completed or planned to complete preventative surgery in the future. We conclude that this type of forum provides a valuable opportunity for BRCA carriers and their families to receive updated medical information, share personal experiences, provide and receive support, as well as change health behaviors.     

Clinical Characterization and Risk Profile of Individuals Seeking Genetic Counseling for Hereditary Breast Cancer in Brazil

Hereditary breast cancer (HBC) accounts for 5–10% of breast cancer cases and it significantly increases the lifetime risk of cancer. Our objective was to evaluate the sociodemographic variables, family history of cancer, breast cancer (BC) screening practices and the risk profile of cancer affected or asymptomatic at-risk women that undergo genetic counseling for hereditary breast cancer in public Brazilian cancer genetics services. Estimated lifetime risk of BC was calculated for asymptomatic women using the Gail and Claus models. The majority of women showed a moderate lifetime risk of developing BC, with an average risk of 19.7% and 19.9% by the Gail and Claus models, respectively. The average prior probability of carrying a BRCA1/2 gene mutation was 16.7% and overall only 32% fulfilled criteria for a hereditary breast cancer syndrome as assessed by family history. We conclude that a significant number of individuals at high-risk for HBC syndromes may not have access to the benefits of cancer genetic counseling in these centers. Contributing factors may include insufficient training of healthcare professionals, disinformation of cancer patients; difficult access to genetic testing and/or resistance in seeking such services. The identification and understanding of these barriers is essential to develop specific strategies to effectively achieve cancer risk reduction in this and other countries were clinical cancer genetics is not yet fully established.     

Living with Multiple Endocrine Neoplasia Type 1: Decent Care-Insufficient Medical and Genetic Information A Qualitative Study of MEN 1 Patients in a Swedish Hospital

This qualitative study explores how 29 Swedish patients with Multiple Endocrine Neoplasia type 1 (MEN1) experience living with the condition, appraisal of the clinical follow-up program, and surveys their future expectations. The aim of this study is to build knowledge about this patient group in order to provide optimal care. The participants describe physical, psychological, and social limitations in their daily activities and how these limitations influence quality of life. Our findings indicate that a majority of patients have adjusted to their situation, describing themselves as being healthy despite physical symptoms and treatment. The participants received decent care in the clinical follow-up program, - however, greater effort should be put into patient information. These patients might benefit from genetic counseling. Health professionals involved should recognize their potential impact and influence on a patient’s ability to adjust to these circumstances. Antonovsky`s Sense of Coherence theory is used to discuss these findings.     

Using Adult Learning Theory Concepts to Address Barriers to Cancer Genetic Risk Assessment in the African American Community

Utilization of cancer genetic risk assessment can be profoundly influenced by an individuals’ knowledge of risk assessment, attitudes regarding illness and healthcare, and affective reactions derived from social norms. Race and ethnicity play a powerful role in the development of an individual's attitudes and should be considered when attempting to understand a person's openness to cancer genetic risk assessment (Lannin et al., 1998). Until recently, however, cancer screening and prevention programs have been primarily based on data from studies conducted with the Caucasian population, yielding data that are not fully applicable to the African American community. In the last several years, research findings regarding African American's knowledge, attitudes, and feelings about genetic counseling and testing have grown (Matthews et al., 2000; Singer et al., 2004; Thompson et al., 2003). However, to the authors’ knowledge, these data have yet to be presented in a manner that both summarizes the barriers that African Americans have reported regarding cancer genetic risk assessment, while at the same time suggesting methods individual genetic counselors can utilize during community presentations to help address these barriers. This article will first summarize previous empirical findings regarding African Americans’ knowledge, attitudes, and feelings about cancer genetic risk assessment. The article will then apply adult learning theory to those findings to provide genetic counselors with practical, theory based techniques to apply toward community based educational programs with African American groups.     

Reasons-Responsive Compatibilism and the Consequences of Belief

John Martin Fischer and Mark Ravizza offer a theory of moral responsibility which makes responsibility dependent upon the way in which moral agents view themselves. According to the theory, agents are responsible for their actions only if they think of themselves as apt candidates for praise and blame; if they come to believe they are not apt candidates for praise and blame, they are ipso facto not morally responsible. In what follows, I show that Fischer and Ravizza’s account of responsibility for consequences is inconsistent with this subjective element of their theory, and that the subjective element may be retained only if they are willing to implausibly restrict their account of responsibility for consequences. I end by discussing the broad significance of the failure of the subjective element for their overall approach to moral responsibility.     

Naturalistic Explanations of Apodictic Moral Claims: Brentano’s Ethical Intuitionism and Nietzsche’s Naturalism

In this article (1) I extract from Brentano’s works (three) formal arguments against “genealogical explanations” of ethical claims. Such explanation can also be designated as “naturalism” (not his appellation); (2) I counter these arguments, by showing how genealogical explanations of even apodictic moral claims are logically possible (albeit only if certain unlikely, stringent conditions are met); (3) I show how Nietzsche’s ethics meets these stringent conditions, but evolutionary ethics does not. My more general thesis is that naturalism and intuitionism in ethics need not be mutually incompatible.

Why there are no good arguments for any interesting version of determinism

This paper considers the empirical evidence that we currently have for various kinds of determinism that might be relevant to the thesis that human beings possess libertarian free will. Libertarianism requires a very strong version of indeterminism, so it can be refuted not just by universal determinism, but by some much weaker theses as well. However, it is argued that at present, we have no good reason to believe even these weak deterministic views and, hence, no good reason—at least from this quarter—to doubt that we are libertarian free. In particular, the paper responds to various arguments for neural and psychological determinism, arguments based on the work of people like Honderich, Tegmark, Libet, Velmans, Wegner, and Festinger.     

有关进化心理学局限性的理论思考

进化心理学是现代西方心理学的新取向之一。这一新取向吸引了众多的追随者,但是它自身的核心假设、方法论和认识论方面却存在着局限性。文章从三个方面分析了这种局限性：第一,进化心理学的核心假设是心理的模块性观点。依据这种观点,心灵由大量功能各异的心理模块组成,但是来自于心理学和生物学的研究都表明这种观点是缺乏科学依据的。第二,进化心理学从过去的角度理解现在,所依据的事实大多是推测性的,更多的是一种历史叙事,从方法论的角度来说,这种研究不具备可证伪性,不符合科学方法论的基本原则。第三,在认识论方面,进化心理学继承了社会生物学的传统,有意或无意地夸大了基因的作用,贬低了个体发展过程中其它因素,现代生命科学的研究已经证明了基因决定论的虚假性     

儿童发展中的社会过程和遗传的影响：双生子和养子女设计的新颖方法

双生子与养子女的研究尤其能对环境影响的机制提供证据。本文扼要地概述了“非共享环境与青少年发展”（NEAD）计划的部分研究成果,特别是子代对父代影响的成果,同时本文也讨论了今后计量行为遗传学的可能走向     

基因检测与治疗中若干问题的伦理学思考

随着基因组学的发展,临床医学中出现了基因检测与基因治疗的新方法,伴随着基因技术的临床应用出现了一些伦理、法律和社会新问题,迫使人们从理论和观念层次加以考察并探讨解决问题的可能性途径,对基因检测和基因治疗中出现或可能出现的伦理学问题进行了初步探讨,结合国际人类基因组计划的有关规范,探索了解决问题的可能性途径。