A Qualitative Study of Health Professionals' Views Regarding Provision of Information About Health-Protective Behaviors During Genetic Consultation for Breast Cancer

This study aimed to explore health professionals' views and practice regarding the provision of information about health-protective behaviors (e.g., exercise, alcohol consumption, diet) during genetic consultation for breast cancer. Ten genetic counselors participated in three focus groups, and seven medical specialists were interviewed in a focus group or individually. Data was analyzed using the constant comparative method. Findings suggested that health professionals held differing, often opposing, views about the value of health-protective behaviors for women at increased risk of breast cancer. The content and extent of information provided about health-protective behaviors varied widely, and participants expressed a need to form consensus regarding information provision both within and across clinics. The main barriers to providing information regarding health-protective behaviors included the lack of research evidence regarding the impact of these factors and higher priority of other information need to be provided in the limited consultation time. Participants generally did not consider it their role to promote health-protective behaviors, and were concerned about the psychological impact of providing information about behavioral risk factors during genetic consultations.     

A Survey of Patients’ Experiences with the Cancer Genetic Counseling Process: Recommendations for Cancer Genetics Programs

In order to promote ongoing quality improvement of not only the Penn State Cancer Genetics Program, but also other cancer risk assessment programs throughout the country, we developed, piloted and conducted a survey to explore patient expectations, experiences, and satisfaction with the cancer genetic counseling process. The comprehensive survey was mailed to 340 eligible patients, 156 (45.9%) of whom returned the completed survey within the allotted time. Responses to closed-ended questions were tallied and open-ended questions were content analyzed. Major findings show that: (1) Patients were seeking cancer-related information and support throughout the cancer risk assessment process and were interested in participating in available research studies; (2) The setting in which patients are seen for cancer risk assessment may pose potential emotional ramifications; (3) Misperceptions regarding insurance discrimination and lack of insurance coverage persist; (4) Patients view the genetic counselor as responsible for updating them about new discoveries. Specific recommendations for cancer genetics programs are included.     

Banking Seed: Use and Value in the Conservation of Agricultural Diversity

Since the 1930s it has been widely acknowledged that agricultural crop diversity is being lost at an alarming rate. The international response to this genetic erosion has principally taken the form of ex situ genebanks. In these facilities and in the international regulatory frameworks that now surround them, it is genetic diversity that is the focus of conservation efforts. This focus, however, passes over the many other important diversities—both biological and social (or ‘biosocial’)—that exist in, and depend on, agricultural environments. These diversities cannot be conserved in genebanks. In addition to failing to actually conserve agricultural diversity (in any full sense of the term), ex situ banking projects also produce important potential inequalities—in terms of which material is banked and who has access to it. If, however, we refuse to accept an exclusive focus on the genetic components of plants, and instead insist on a brand of conservation that includes whole biosocial, more-than-human communities, then the role of banked resources must be radically rethought. Genebanks might instead take the place of central nodes in networks of diversity sharing, helping to keep plant varieties growing and circulating. This focus, in turn, requires that we also pay more critical attention to the various economic, legal and other mechanisms that prevent or stifle the flow and development of plant genetic resources in/to agricultural communities—especially those of peasant and indigenous farmers that play such a crucial role in conserving the world's (agro)biodiversity.     

基因研究中的知情同意之惑

知情同意作为生命伦理的重要原则,在基因研究中同样占据重要的地位,由于基因研究中知情同意的异质性,在基因研究中面临着诸如如何理解其知情同意的异质性、群体知情同意、基因知情与基因隐私、利益冲突等问题.通过分析基因研究中知情同意的特殊性,综合国内外此领域的已有研究,运用理论联系实际的方法,得出结论认为,只有正确区分基因知情与基因隐私的权利主体,用伦理规范来解决利益冲突,在发展中不断完善知情同意,才能够取得科技与伦理的共赢.     

The structure of “communities” and communications in the new millennium

The three lineages of information,—the genetic, the cultural and artifactual—will increasingly merge their constituent information contents through advances in biotechnology and information technology. This will redefine what constitutes “social” and what constitutes “community.” A community's members communicate with their “significant others” and change their internal information states (and their internal and external behaviors). Under conditions of merging, information exchanges occur across all the three lineages. In this sense, the concept of significant other,—that is, a communicating entity—, is now spread from human communities to encompass also the biological and the artifactual. A seamless merging between the three realms now occurs affecting their respective internal information stores. The resulting image of interactions that now arises is of multiple oceans of communities, operating at different levels, the genetic, the cultural and the artifactual. There are exchanges across the different levels, up and down and sideways, as information is translated from one realm to the other. These dynamics result in changes in the evolutionary characteristics of each lineage and sub‐lineage, including the internal perceptions from within a lineage, namely in the language of evolutionary epistemology, its “meanings” and “hypotheses” on the world. A future sociology must necessarily take into account these factors and incorporate the dynamics of all three realms.     

The Theory Of Social–Cultural Genetic Gene (S- c Dna)

It took a long time for humanity to know about biogenetics. And yet its role as a determinant in the living system was not proven until the twentieth century when DNA was discovered. Similarly, it took a long time for humanity to know about culture and civilization. And yet until now there is neither definite standards for differentiating them nor a definition that is commonly acceptable. By taking an evolutionary pluralism as ontology framework and the transdisciplinary research method of the systems science, we have in the new social system model discovered the central rules that govern the social–cultural heredity: Culture–Production–Civilization. The relationship between culture and civilization is exactly that of genotype and phenotype. Culture is the S-cDNA within the social system while civilization is the social phenotype. Culture is a determinant that ultimately determines the existence, stagnation, change, and evolution of the social system.     

Big Gods and other watcher mechanisms in the formation of large groups

Norenzayan's effort to integrate genetic and cultural evolution is a welcome advance over previous efforts, as is the attention he devotes to different levels of analysis from cognitive mechanisms to large group interactions. The scope of Norenzayan's argument, however, is bound to leave many scholars of religion feeling uneasy. The content of his model, which is most likely over specified, will need further testing in light of historical evidence. Comparison of Big Gods with Robert Bellah's Religion in Human Evolution (2011) highlights some of the choices Norenzayan made in designing his model and suggests ways it could be elaborated. Historians of religion who would like to help test his model could keep an eye out for ‘watcher mechanisms’ that might play more of a role than ‘moralizing Big Gods’ in some traditions and, thus, potentially offer an alternative route to large, anonymous, yet stable groups.     

Risk perceptions,worry, and attitudes about genetic testing for breast cancer susceptibility

This study assessed the unique associations of risk perceptions and worry with attitudes about genetic testing for breast cancer susceptibility. Women (general practitioner clinic attenders, university students, and first-degree relatives of breast cancer survivors; N?=?303) read information about genetic testing and completed measures assessing perceived cancer risk, cancer worry, and genetic testing attitudes and beliefs. Worry was associated with greater interest in genetic testing, stronger beliefs that testing has detrimental emotional consequences, and positive beliefs about benefits of testing and risk-reducing surgeries. Perceived risk was unrelated to interest and associated with more skeptical beliefs about emotional consequences and benefits of testing and risk-reducing surgeries. At low worry levels, testing interest increased with more positive beliefs about testing benefits; at high worry levels, interest was high regardless of benefits beliefs. The findings support Leventhal's Common-Sense Model of self-regulation delineating interactive influences of risk-related cognitions and emotions on information processing and behavior.     

Living with Hereditary Haemorrhagic Telangiectasia: stigma,coping with unpredictable symptoms,and self-advocacy

Abstract

Objective: Hereditary Haemorrhagic Telangiectasia (HHT) is a genetic condition causing frequent nose bleeds, skin lesions (telangiectasia) and arteriovenous malformations. Approximately, 50% of people experience life-threatening HHT symptoms including haemorrhages in the brain, lungs and liver. This study aimed to gain a qualitative understanding of the psychosocial impact of HHT over time. Design: Using a phenomenological framework, a rigorous narrative analysis was performed on 20 semi-structured interviews with individuals with HHT aged 20s–60s. Main outcome measures: Qualitative themes explaining life experiences prior to and following a clinical diagnosis of HHT. Results: Narratives highlighted four psychosocial themes: (i) the psychological impact of visible symptoms was significant and related to experiences of social stigma, (ii) individuals struggled to identify triggers of symptoms in order to reduce unpredictability, (iii) an illness identity was rejected by minimising HHT when talking about the present self, and by positive reframing as ‘lucky’ and (iv) self-advocacy was necessitated due to lack of expert coordinated care. Conclusion: HHT has a demanding impact on social, physical and psychological well-being. These findings have significant implications for health care, as narratives about interactions with health professionals often used the terms ‘frustrating’ and ‘not being heard’.     

Predictors of interest in direct-to-consumer genetic testing

Direct-to-consumer (DTC) genetic testing is an increasingly available option among individuals searching for information about their health risk factors and ancestry. This study is one of the first to examine predictors of interest in DTC genetic testing. Participants read one of the three types of information about DTC genetic testing (positive only, negative only or both) and reported perceptions of and intentions to pursue testing. The information which people read, their perceptions of the benefits of testing, their perceptions of the barriers to testing and anticipated regret predicted intentions to undergo testing. Interestingly, people who read both positive and negative information did not differ from people who read only negative information in their intentions to pursue testing. We discuss the implications of these findings for predicting interest in this relatively new type of genetic testing and for designing interventions to encourage (or discourage) testing.