Collectivizing Rescue Obligations in Bioethics

Bioethicists invoke a duty to rescue in a wide range of cases. Indeed, arguably, there exists an entire medical paradigm whereby vast numbers of medical encounters are treated as rescue cases. The intuitive power of the rescue paradigm is considerable, but much of this power stems from the problematic way that rescue cases are conceptualized—namely, as random, unanticipated, unavoidable, interpersonal events for which context is irrelevant and beneficence is the paramount value. In this article, I critique the basic assumptions of the rescue paradigm, reframe the ethical landscape in which rescue obligations are understood, and defend the necessity and value of a wider social and institutional view. Along the way, I move back and forth between ethical theory and a concrete case where the duty to rescue has been problematically applied: the purported duty to regularly return incidental findings and individual research results in genomic and genetic research.     

The Importance of Context in the Genetic Transmission of U.S. Party Identification

In this study, we discuss one example where behavior genetic findings vary greatly across political contexts. We present original findings on how party identification is heritable around the 2008 election on a sample of twins from Minnesota. As this is in contrast with findings from the late 1980s and with how a mid‐2000 study interpreted their results, we explain how the increasing partisan ideological polarization could be responsible for these seemingly contradictory findings. In the Minnesota sample, we show a genetic correlation between party identification and ideology, a finding consistent in the political science literature. We highlight how heritability of political characteristics, like all others, is population specific and highly context dependent stressing its nondeterministic nature.     

How similar are the changes in neural activity resulting from mindfulness practice in contrast to spiritual practice?

Meditation and spiritual practices are conceptually similar, eliciting similar subjective experiences, and both appear to provide similar benefits to the practicing individuals. However, no research has examined whether the mechanism of action leading to the beneficial effects is similar in both practices. This review examines the neuroimaging research that has focused on groups of meditating individuals, groups who engage in religious/spiritual practices, and research that has examined groups who perform both practices together, in an attempt to assess whether this may be the case. Differences in the balance of activity between the parietal and prefrontal cortical activation were found between the three groups. A relative prefrontal increase was reflective of mindfulness, which related to decreased anxiety and improved well-being. A relative decrease in activation of the parietal cortex, specifically the inferior parietal cortex, appears to be reflective of spiritual belief, whether within the context of meditation or not. Because mindful and spiritual practices differ in focus regarding the ‘self’ or ‘other’ (higher being), these observations about neurological components that reflect spirituality may continue work towards understanding how the definition of ‘self’ and ‘other’ is represented in the brain, and how this may be reflected in behaviour. Future research can begin to use cohorts of participants in mindfulness studies which are controlled for using the variable of spirituality to explicitly examine how functional and structural similarities and differences may arise.     

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.     

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.     

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.