Do Women who Receive a Negative BRCA1/2 Risk Result Understand the Implications for Breast Cancer Risk?

Background/aims: National guidelines endorse using evidence-based tools to identify those at risk for hereditary breast and ovarian cancer (HBOC). This study aimed to evaluate whether women deemed not to be at increased risk of being a BRCA mutation carrier; the majority of those screened, recall, understand and accept the implications of these results for breast cancer risk.

Methods: We conducted an online survey with women (n = 148) who screened negative on a brief HBOC screener.

Willingness to decrease mammogram frequency among women at low risk for hereditary breast cancer.

This study aimed to assess women's willingness to alter mammogram frequency based on their low risk for HBOC, and to examine if cognitive and emotional factors are associated with women's inclination to decrease mammogram frequency. We conducted an online survey with women (N = 124) who were unlikely to have a BRCA mutation and at average population risk for breast cancer based on family history. Most women were either white (50%) or African American (38%) and were 50 years or older (74%).

Laypeople Are Strategic Essentialists, Not Genetic Essentialists.

In the last third of the twentieth century, humanists and social scientists argued that attention to genetics would heighten already-existing genetic determinism, which in turn would intensify negative social outcomes, especially sexism, racism, ableism, and harshness to criminals. They assumed that laypeople are at risk of becoming genetic essentialists. I will call this the "laypeople are genetic essentialists model.

Controversies among Cancer Registry Participants, Genomic Researchers, and Institutional Review Boards about Returning Participants' Genomic Results.

Objectives: Genomic information will increasingly be used to aid in the prevention, diagnosis, and treatment of disease. Several national initiatives are paving the way for this new reality, while also promoting new models of participant-engaged research. We compare the opinions of research participants in a cancer registry, human genetic researchers, and institutional review board (IRB) professionals about the return of individual-level genetic results (ROR).

The character of scientists in the Nobel Prize speeches.

This essay describes the ethos (i.e. the character projected to specific audiences) of the 25 Nobel Lectures in Physics, Chemistry, and Physiology or Medicine given in 2013-2015 and the 15 Presentation Speeches given at the Nobel Banquets between 2011 and 2015.

Participants' Role Expectations in Genetics Research and Re-consent: Revising the Theory and Methods of Mental Models Research Relating to Roles.

The rise of large cohort-based health research that includes genetic components has increased the communication challenges for researchers. Controversies have been amplified over requirements for re-consent, return of results, and privacy protections, among other issues. This study extended research on the impact that the perceived role of "research participant" might have on communication expectations to illuminate research participants' preferences for re-consent.

Views of Cohort Study Participants about Returning Research Results in the Context of Precision Medicine.

Background: The practice of biorepository-based genetics research raises questions related to what ethical obligations researchers have to their participants. It is important to explore and include the thoughts of current biorepository participants as we move forward with this type of research.

Methods: Thirty participants (17 cancer patients, 7 cancer-free controls, and 6 relatives) were drawn from the Northwest Cancer Genetics Registry and participated in qualitative interviews lasting between 45 and 90 min.

Consent Issues in Genetic Research: Views of Research Participants.

Background: With the arrival of large-scale population-based genomic research studies, such as the Precision Medicine Initiative (PMI), the question of how to best consent participants is significant, and in an era of patient-centered research, few studies have evaluated participants' preferences about re-consent and broad consent. Using quantitative methods, this study evaluates participants' views regarding the acceptability of re-consent and broad consent in subjects from the Participant Issues Project.

Methods: A total of 450 participants were recruited from a cancer genetics registry, including cancer patients, their relatives, and controls.

Participant views on consent in cancer genetics research: preparing for the precision medicine era.

The Precision Medicine Initiative (PMI) has created considerable discussions about research participant issues including re-consent and how and when to incorporate the patient experience into clinical trials. Within the changing landscape of genetic and genomic research, the preferences of participants are lacking yet are needed to inform policy. With the growing use of biobanks intended to support studies, including the national research cohort proposed under the PMI, understanding participant preferences, including re-consent, is a pressing concern.

Recent rhetorical studies in public understanding of science: Multiple purposes and strengths.

We review rhetorical studies of the public understanding of science that were published in journals since the last major review in this journal (1994-2011). Our review suggests that a vibrant and increasingly sophisticated body of research 1) has pursued Gross's (1994) emphasis on contextual studies and studies emphasizing judgment of scientific rhetorics, 2) is producing a growing body of work designed to develop specific strategies for scientific rhetorics, and 3) has produced a host of studies exploring science-public interactions (rather than producing sustained fora for such interactions, as Gross argued for). It has, however, 4) produced only modest independent development of rhetorical theories.

Public attitudes and beliefs about genetics.

The existing research base on public attitudes about genetics shows that people's attitudes vary according to the specific technologies and purposes to which genetic knowledge is applied. Genetic testing is viewed highly favorably, genetically modified food is viewed with ambivalence, and cloning is viewed negatively. Attitudes are favorable for uses that maintain a perceived natural order and unfavorable for uses that are perceived to change it.

Future health applications of genomics: priorities for communication, behavioral, and social sciences research.

Despite the quickening momentum of genomic discovery, the communication, behavioral, and social sciences research needed for translating this discovery into public health applications has lagged behind. The National Human Genome Research Institute held a 2-day workshop in October 2008 convening an interdisciplinary group of scientists to recommend forward-looking priorities for translational research. This research agenda would be designed to redress the top three risk factors (tobacco use, poor diet, and physical inactivity) that contribute to the four major chronic diseases (heart disease, type 2 diabetes, lung disease, and many cancers) and account for half of all deaths worldwide.

The psychometric property and validation of a fatalism scale.

In this article, we conceptualised fatalism as a set of health beliefs that encompass the dimensions of predetermination, luck and pessimism. A 20-item scale was developed as a measurement instrument. Confirmatory factor analyses were performed to test the dimensionality of the scale.

Beliefs about heritability of cancer and health information seeking and preventive behaviors.

Background: Individuals' beliefs about cancer heritability could affect their health information seeking and health behaviors.

Methods: Data from 5813 English-speaking adult respondents to the 2003 Health Information National Trends Survey were analyzed.

Results: Individuals who believed that knowledge of family history or genes can reduce cancer risk were significantly more likely to have ever looked for cancer information.

Functions of health fatalism: fatalistic talk as face saving, uncertainty management, stress relief and sense making.

Much research on fatalism assumes that fatalistic statements represent a global outlook that conflicts with belief in the efficacy of health behaviours. Other scholars have suggested a more contextual approach, suggesting that fatalism fulfils personal and social functions. This study analyses 96 in-depth lay interviews in the US, most with low-income members of the general public, about four diseases: heart disease, lung cancer, diabetes and depression.

Depiction of gene-environment relationships in online medical recommendations.

Purpose: This study examines the presentation of genetic and behavioral causation and prevention in websites that make medical recommendations to lay people for four diseases: heart disease, diabetes, lung cancer, and depression.

Methods: A sample of 73 online medical recommendations from major health institutions and information portals were retrieved for content analysis, with a focus on the depiction of gene-environment relationships.

Results: The results show a clear preponderance of behavioral causation and recommendations.

Assessing hypothetical scenario methodology in genetic susceptibility testing analog studies: a quantitative review.

Hypothetical scenario methodology is commonly employed in the study of genetic susceptibility testing uptake estimation. The methodology, however, has not been rigorously assessed and sizeable gaps exist between estimated and actual uptake for tests that have recently become available. This quantitative review explores the effect of several theoretically based factors on genetic test uptake accuracy among a sample of 38 articles.

Generalization through similarity: motif discourse in the discovery and elaboration of zinc finger proteins.

Background: Biological organisms and their components are better conceived within categories based on similarity rather than on identity. Biologists routinely operate with similarity-based concepts such as "model organism" and "motif." There has been little exploration of the characteristics of the similarity-based categories that exist in biology.

How geneticists can help reporters to get their story right.

Many geneticists are disgruntled with the coverage of genetics in the mass media, yet geneticists themselves have a part to play in improving that coverage. This article aims to help geneticists to do so by explaining the forces that shape science news. It provides some specific options for reducing hype, countering genetic determinism and preventing the use of genetics to reinforce discriminatory messages, slants that many reporters are inclined to give to their articles.

Genes and race in the news: a test of competing theories of news coverage.

Objectives: To examine newspaper coverage of race and genetics to identify patterns and possible explanations for them in extant theory in order to improve health promotion campaigns.

Methods: Articles from Lexus-Nexus database fitting the search criteria were coded according to themes developed from the scientific literature and a prereading of texts.

Results: Articles present an array of attitudes toward race and genetics.

Development and validation of tools to assess genetic discrimination and genetically based racism.

It is possible that communication from mass media, public health or consumer advertising sources about human genetics and health may reify stereotypes of racialized social groups, perhaps cueing or exacerbating discriminatory and racist attitudes. This research used a multifaceted approach to assess lay perceptions of genetic discrimination and genetically based racism (N = 644). Two tools for use in strategic planning efforts associated with communicating about human genetics and health, the genetic discrimination instrument (GDI) and the genetically based racism instrument (GBRI), were derived.

Evaluating direct-to-consumer marketing of race-based pharmacogenomics: a focus group study of public understandings of applied genomic medication.

Some medical providers have advocated applied genomics, including the use of genetically linked racial phenotypes in medical practice, raising fear that race-based medication will become justified. As with other emerging medical genetic technologies, pharmaceutical companies may advertise these treatments. Researchers fear that consumers will uncritically accept pharmaceutical messages and demand the product.