Engineering Values Into Genetic Engineering: A Proposed Analytic Framework for Scientific Social Responsibility

Recent experiments have been used to “edit” genomes of various plant, animal and other species, including humans, with unprecedented precision. Furthermore, editing the Cas9 endonuclease gene with a gene encoding the desired guide RNA into an organism, adjacent to an altered gene, could create a “gene drive” that could spread a trait through an entire population of organisms. These experiments represent advances along a spectrum of technological abilities that genetic engineers have been working on since the advent of recombinant DNA techniques. The scientific and bioethics communities have built substantial literatures about the ethical and policy implications of genetic engineering, especially in the age of bioterrorism. However, recent CRISPr/Cas experiments have triggered a rehashing of previous policy discussions, suggesting that the scientific community requires guidance on how to think about social responsibility. We propose a framework to enable analysis of social responsibility, using two examples of genetic engineering experiments.     

Development of a Communication Aid to Facilitate Risk Communication in Consultations with Unaffected Women from High Risk Breast Cancer Families: A Pilot Study

The literature on risk perception in women from high-risk breast cancer families reveals persistent over-estimation of risk, even after counseling. In this study, a communication aid was designed to facilitate discussion of risk between clinical geneticists and genetic counselors and women from this high-risk population. Method: Stage 1. The aid was developed by an expert panel of clinical geneticists, genetic counselors, psychologists, an epidemiologist, an oncologist, linguists and a consumer. It was guided by the international literature on risk communication and a large multi-centre Australian study of risk communication. The 13 page full-color communication aid used varying formats of words, numbers, graphs and pie-charts to address (a) the woman’s subjective risk; (b) the population risk of breast cancer; c) the risk of inherited breast cancer; (d) the cumulative risk for women with BRCA1 and BRCA2 mutations; (e) family risk factors; (f) the woman’s suitability for genetic testing; (h) screening and management recommendations, and (i) a re-assessment of the woman’s subjective risk. Stage 2: A before–after pilot study of 38 women who were unaffected with breast cancer and were attending four Australian familial cancer clinics was undertaken. Baseline and follow-up questionnaires were completed by 27 women. Outcomes were compared to those observed in 107 similar women undergoing genetic counseling without the communication aid in 2001. Results: The risk communication aid appears to be beneficial; breast cancer genetics knowledge improved in some areas and importantly, risk perceptions improved in the cohort receiving the communication aid. Psychological measures showed no difference in anxiety or depression between the group receiving the communication aid and the comparison cohort. Women and clinicians were very positive about the usefulness of the communication aid as an adjunct to the genetic counseling consultation.     

If We Build It … Will They Come? – Establishing a Cancer Genetics Services Clinic for an Underserved Predominantly Latina Cohort

Background: Cancer genetic counseling and testing is a standard of care option for appropriate families and can identify individuals at increased risk prior to diagnosis, when prevention or detection strategies are most effective. Despite documented efficacy of cancer risk reduction in high-risk individuals, underserved and minority individuals have a disproportionate cancer burden and limited access to genetic counseling. Methods: A needs assessment survey documented gaps in knowledge and interest in prevention. Satellite clinics were established at two indigent healthcare systems. Cancer genetics CME lectures were conducted and referral guidelines disseminated to clinicians who referred patients for counseling. Results: An increase in clinician knowledge was demonstrated post-CME and reflected by quality referrals. Eighty-eight percent of patients kept their appointments. In the predominantly Latina⁶ (n=77) clinic population, 71.4% were affected with cancer, and 17 mutation positive families were identified. Preliminary data shows a positive impact on patients' motivation and behavior. The majority has expressed satisfaction and reduction in anxiety. Conclusions: This study demonstrates feasibility and acceptability of cancer genetics services in this population, suggesting the potential to reduce cancer morbidity in underserved, high-risk families.“Latino” is the most common census term for individuals of Spanish, Mexican, Central and South American, Cuban, or Puerto Rican descent, referring to ethnicity, and is generally considered a more ethnically/culturally based term for individuals of the aforementioned groups. As this cohort is female the feminine noun “Latina” is used     

The Relationship of Nondirectiveness to Genetic Counseling: Report of a Workshop at the 2003 NSGC Annual Education Conference

Nondirectiveness has been a guiding principle for genetic counseling since the founding of the profession. However, its efficacy and appropriateness in this role have been frequently questioned. A workshop at the 2003 Annual Education Conference of the National Society of Genetic Counselors provided audience participation in a discussion of these issues. Participants presented arguments for and against nondirectiveness as a central ethos. They described complex personal transitions in adapting what they had learned about nondirectiveness during training to the realities of the workplace. There was support for flexible approaches to genetic counseling, with varying adherence to nondirectiveness, based on client and family needs and values, clinical circumstances, and desired counseling outcomes. The discussion supports the use of clinical experience, outcomes research, and the experience of other professions to move beyond nondirectiveness and more accurately identify the theoretical bases that underlie genetic counseling in the variety of circumstances in which it is currently practiced.     

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.     

A Community Practice Model for Community Psychologists and Some Examples of the Application of Community Practice Skills from the Partnerships for Success Initiative in Ohio

This paper provides an opportunity to consider the concept of community practice from the vantage point of community psychology. The author argues that community psychology has significant potential to change organizations, communities, and other settings to benefit setting occupants. However, it is the author's contention that the full realization of this potential is contingent upon an organized effort to engage in formal community practice. The author defines community practice in terms of four skill sets related to mobilization, planning, implementation, and evaluation. The author also describes settings that might support community practice and discusses implications for training and the field of community psychology in general. Finally, the author illustrates several community practice skills and roles in the context of a local community-based initiative in Ohio called Partnerships for Success.     

Do Investment Risk Tolerance Attitudes Predict Portfolio Risk?

We investigated a new instrument designed to assess investment risk tolerance, the Risk Tolerance Questionnaire (RTQ). RTQ scores were positively correlated with scores on two other investment risk measures, but were not correlated with a measure of sensation-seeking (Zuckerman, 1994), suggesting that investment risk tolerance is not explainable by a general cross-domain appetite for risk. Importantly, RTQ scores were positively correlated with the riskiness of respondents’ actual investment portfolios, meaning that investors with high risk-tolerance score tend to have higher-risk portfolios. Finally, respondents with relatively more investment experience had more risk-tolerant responses and higher-risk portfolios than less experienced investors.

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.     

结直肠癌患者术后寻求中医药治疗的质性研究

为了解结直肠癌术后患者寻求中医药治疗的目的、体验、信念.采用目的抽样的办法,选取18位结直肠癌术后患者进行个人深入访谈.发现结直肠癌术后的患者,选择中医药治疗的目的主要有以下几个方面：减轻放、化疗的不良反应,使身体尽快恢复,提高生活质量,防止复发转移等.随着治疗的进行,患者对中医的认识逐步提高.中医药的疗效主要体现在各种症状及客观指标的改善上,近期良好的治疗体验使患者对实现远期目标更具信心.