Client Advocacy and Collaboration with Insurance and Laboratory Testing Agencies: A Case Study Illustrating Genetic Counselor Roles

Genetic counseling and the many roles a genetic counselor must assume to provide quality genetic health care are becoming increasingly complex, especially when the genetic condition is rare, and DNA testing is costly and not yet routinely used. A case study of a couple with a family history of retinoblastoma and their pursuit of DNA testing for prenatal diagnosis is presented. The case study illustrates the instrumental role of the genetic counselor in advocating for clients for genetic services such as DNA testing and in educating insurance companies in the nature and importance of such services to achieve improved client health care outcomes.     

Embodied Knowledge and Making Sense of Prenatal Diagnosis

Open-ended, qualitative interviews with women to whom amniocentesis was offered were analyzed to understand how women made sense of these tests. We found that women, whether tested or not, negotiated with biomedical information. They transformed it through identifiable processes, then wove it with their own instincts and beliefs and with their personal experiences, thereby creating embodied knowledge on which their decisions were based. Women who were and were not tested may have differed from each other when categorized on the basis of a final, binary choice, but they were more alike than unalike in reaching this point. The apparent importance of embodied knowledge suggests the critical role of the listening activities of the genetic counselor and of awareness of the validity and importance of women's complementary ways of knowing and doing in understanding the uses and meanings of prenatal genetic testing.     

Keeping Up with the Cloneses -- Issues in Human Cloning

The advent of cloning animals has created a maelstrom of social concern about the ethical issues associated with the possibility of cloning humans. When the ethical concerns are clearly examined, however, many of them turn out to be less matters of rational ethics than knee-jerk emotion, religious bias, or fear of that which is not understood. Three categories of real and spurious ethical concerns are presented and discussed: 1) that cloning is intrinsically wrong, 2) that cloning must lead to bad consequences, and 3) that cloning harms the organism generated. The need for a rational ethical framework for discussing biotechnological advances is presented and defended.     

Genetically Engineered Traits versus Virtuous Living

It is fruitless to attempt to genetically engineer virtuous living. Prenatal genome modification could, in principle, establish desired traits and predispose us to certain behaviors. But, traits given at birth are not the same thing as a virtuous character that can be acquired only by self-discipline. The ethicist further fears that free market eugenics—the sale of gene modification—may become one more expression of the social sin our culture inherits.     

Understanding the prevalence and correlates of implicit theories of weight in the United States: Insights from a nationally representative sample

Objectives: The primary aim of this research is to understand how mindsets about weight controllability in the United States relate to population health. We examined the distribution of people’s implicit theories of weight, from an incremental (controllable) to an entity (not controllable) mindset, in a nationally representative sample, as well as their relation to: sociodemographic factors, beliefs about behaviour and genetics as causes of obesity and engagement in weight management-relevant behaviours.

Methods: We report data from the National Cancer Institute’s Health Information National Trends Survey 4.

Results: A majority of respondents endorsed an incremental mindset of body weight, but endorsement of this mindset was stronger among younger, white respondents, and those with a higher income and more educational attainment. A stronger incremental mindset was related to stronger behaviour and weaker genetic causal beliefs about obesity, as well as a tendency to report increased engagement in weight management-relevant behaviours.

Conclusions: Our research provides evidence that although incremental mindsets are more common overall and associated with engagement in health behaviours that can contribute to or detract from population health, incremental mindsets are less common among individuals from more marginalised groups.     

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.     

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.