Scientism, trust, value alignment, views of nature, and U.S. public opinion about gene drive mosquitos.

Gene drive could be a powerful tool for addressing problems of conservation, agriculture, and human health caused by insect and animal pests but is likely to be controversial as it involves the release of genetically modified organisms. This study examined the social determinants of opinion of gene drive. We asked a representative sample of the U.S. public to respond to a description of a hypothetical application of a gene-drive mosquito to the problem of malaria and examined the relationship of these responses with demographic and ideological beliefs. We found strong general approval for the use of gene-drive mosquitos to address malaria, coinciding with the concern about a possible environmental impact of modified mosquitos and that gene drives represent "too much power over nature." Among the determinants we measured, respondent acceptance of scientism and trust that scientists are advancing the public's interest were the greatest predictors of views of gene drive.

To donate, or not to donate, that is the question: Latino insights into brain donation.

INTRODUCTION: Latinos are underrepresented in brain autopsy research on Alzheimer's disease and related dementias (ADRD). The study's purpose is to identify Latinos' attitudes about brain donation (BD) to inform methods by which researchers can increase autopsy consent. METHODS: Forty Latinos (mean age: 59.4 years) completed a semi-structured interview and were presented with educational information about BD. Participants completed a questionnaire assessing their understanding of BD and willingness to donate their brain for research. RESULTS: Among participants, there was near unanimous support for BD to study ADRD after hearing educational information. However, prior to the information presented, participants reported a lack of knowledge about BD and demonstrated a possibility that misunderstandings about BD may affect participation. DISCUSSION: While nearly all study participants agree that donating is beneficial for research and for future generations, the lack of BD information must be addressed to help support positive attitudes and willingness for participation.

Learning to Practice Compassionate Care: Medical Students Discuss Their Most Memorable Lessons.

Compassion in interactions between physicians and patients can have a therapeutic effect independent of the technical medical treatment provided. However, training physicians to effectively communicate compassion is challenging. This study explores how medical students experienced training focused on interacting with patients by examining students' reports of particularly memorable lessons. Six focus groups were conducted with medical students (total n = 48) in their fourth year of training. We report on responses from students to the question, "What was the most memorable lesson you have learned about interacting with patients?" Students discussed lessons aimed at patient-centered physical navigation, interpersonal navigation, and perspective taking. Concerns were raised that navigation techniques felt inauthentic and that perspective taking was too time consuming to be sustainable in actual practice. While perspective-taking exercises should motivate medical students to treat every patient with dignity by demonstrating the complexity of others' lives, if students assume that full understanding is a prerequisite to delivery of compassionate care, they may dismiss explicit techniques of patient-centered care as inauthentic and perceive compassion and efficiency as mutually exclusive.

California Residents' Perceptions of Gene Drive Systems to Control Mosquito-Borne Disease.

Scientists developing gene drive mosquitoes for vector control must understand how residents of affected areas regard both the problem of mosquito-borne disease and the potential solutions offered by gene drive. This study represents an experiment in public engagement at an early stage of technology development, intended to inform lab scientists about public attitudes toward their research and inspire consideration and conversation about the social ramifications of creating mosquitoes with gene drive. Online focus groups with California residents explored views on mosquito-borne disease risk, current mosquito control methods, and the proposed development and use of different classes of gene drives to control Ae. aegypti. Rather than a dogmatic rejection of genetic engineering or gene drive, many participants expressed pragmatic concerns with cost, control, the ability to narrowly target specific species, and the challenges of mistrust and institutional cooperation. Work like this can inform the alignment of community priorities and the professional priorities of scientists and vector control specialists.

Oxitec and MosquitoMate in the United States: lessons for the future of gene drive mosquito control.

In response to growing concerns regarding mosquito-borne diseases, scientists are developing novel systems of vector control. Early examples include Oxitec's OX513A genetically-engineered mosquito and MosquitoMate's Wolbachia-infected mosquito, and systems using 'gene-drive' are in development. Systems based on genetic engineering are controversial and institutions around the world are grappling with the question of who should have a say in how such technologies are field-tested and used. Based on media coverage and public records, we created comparative timelines of the efforts of Oxitec and MosquitoMate to navigate federal and local governance and bring their products to market in the United States. We analyze these timelines with particular attention to the role of public input in technology governance. These cases illustrate how governance of technology in the US is diverse, complex, and opaque. Further, the public response to proposed field trials of the Oxitec product highlights inconsistencies between public expectations for governance and actual practice. As gene-drive mosquito control products develop, both federal and local agencies will find their legitimacy tested without a better procedure for transparently integrating public input.

Interdisciplinary development of a standardized introduction to gene drives for lay audiences.

BACKGROUND: While there is wide consensus that the public should be consulted about emerging technology early in development, it is difficult to elicit public opinion about innovations unfamiliar to lay audiences. We sought public input on a program of research on genetic engineering to control mosquito vectors of disease that is led by scientists at the University of California and funded by the U.S. Defense Advanced Research Projects Agency (DARPA). In preparation for this effort, we developed a series of narrated slideshows to prompt responses to the development of gene drive mosquito control strategies among lay people. We describe the development and content of these slideshows and evaluate their ability to elicit discussions among focus group participants. METHODS: In developing these materials, we used an iterative process involving input from experts in molecular genetics and vector control. Topics were chosen for their relevance to the goals of the scientists leading the program of research. Significant time was devoted to crafting explanations that would be accessible to uninitiated members of the public but still represent the science accurately. Through qualitative analysis of focus group discussions prompted by the slideshows, we evaluated the success of these slideshows in imparting clear technical information sufficient to inform lay discussion. RESULTS: The collaboration resulted in a series of four narrated slideshows that were used to anchor discussions in online focus groups. Many participants described the slideshows as interesting and informative, while also raising concerns and possible risks that were not directly addressed in the material presented. Open-ended comments from participants suggest that the slideshows inspired critical questions, reflection, and conversation about genetically engineered and gene drive mosquitoes. After the final and most technically complex slideshow, however, some respondents made comments suggestive of overwhelm or confusion. CONCLUSION: Our narrated slideshows prompted engaged conversations about genetically engineered mosquitoes among members of the public who were generally naïve to this technology. Narrated slideshows may serve as viable and useful tools for future public engagement on other controversial emerging medical and public health technologies.

Translating gene drive science to promote linguistic diversity in community and stakeholder engagement.

Information about genetic engineering (GE) for vector control in the United States is disseminated primarily in English, though non-English speakers are equally, and in some geographic regions even more affected by such technologies. Non-English-speaking publics should have equal access to such information, which is especially critical when the technology in question may impact whole communities. We convened an interdisciplinary workgroup to translate previously developed narrated slideshows on gene drive mosquitoes from English into Spanish, reviewing each iteration for scientific accuracy and accessibility to laypeople. Using the finalised stimuli, we conducted five online, chat-based focus groups with Spanish-speaking adults from California. Overall, participants expressed interest in the topic and were able to summarise the information presented in their own words. Importantly, participants asked for clarification and expressed scepticism about the information presented, indicating critical engagement with the material. Through collaboration with Spanish-speaking scientists engaged in the development of GE methods of vector control, we translated highly technical scientific information into Spanish that successfully engaged Spanish-speaking participants in conversations about this topic. In this manuscript, we document the feasibility of consulting Spanish-speaking publics about a complex emerging technology by drawing on the linguistic diversity of the scientific teams developing the technology.

A typology of community and stakeholder engagement based on documented examples in the field of novel vector control.

BACKGROUND: Despite broad consensus on the importance of community and stakeholder engagement (CSE) for guiding the development, regulation, field testing, and deployment of emerging vector control technologies (such as genetically engineered insects), the types of activities pursued have varied widely, as have the outcomes. We looked to previous CSE efforts for clarity about appropriate methods and goals. Our analysis yielded a typology of CSE, and related vocabulary, that describes distinctions that funders, organizers, and scholars should make when proposing or evaluating CSE. METHODS: We compiled available formal documentation of CSE projects, starting with projects mentioned in interviews with 17 key informants. Major features of these examples, including the initiators, target groups, timing, goals, and methods were identified using qualitative coding. Based on these examples, subcategories were developed for a subset of features and applied to the identified cases of CSE in the documents. Co-occurrence of subcategorized features was examined for patterns. RESULTS: We identified 14 documented examples CSE projects, which were comprised of 28 distinct CSE activities. We found no clear patterns with respect to timing. However, we found that grouping examples according to whether initiators or targets could enact the immediate desired outcome could help to clarify relationships between goals, methods, and targets. CONCLUSION: Based on this analysis, we propose a typology that distinguishes three categories of CSE: engagement to inquire -where initiators are empowered to act on information collected through engagement with target groups; engagement to influence -where initiators engage to affect the actions of already-empowered target groups; and engagement to involve -where initiators engage to delegate authority to target groups. The proposed typology can serve as a guide for establishing the goals, identifying appropriate methods, and evaluating and reporting CSE projects by directing attention to important questions to be asked well before determining who to engage and how.

Trust and Expectations of Researchers and Public Health Departments for the Use of HIV Molecular Epidemiology.

Background: Molecular epidemiology (ME) is a technique used to study the dynamics of pathogen transmission through a population. When used to study HIV infections, ME generates powerful information about how HIV is transmitted, including epidemiologic patterns of linkage and, potentially, transmission direction. Thus, ME raises challenging questions about the most responsible way to protect individual privacy while acquiring and using these data to advance public health and inform HIV intervention strategies. Here, we report on stakeholders' expectations for how researchers and public health agencies might use HIV ME. Methods: We conducted in-depth semistructured interviews with 40 key stakeholders to find out how these individuals respond to the proposed risks and benefits of HIV ME. Transcripts were coded and analyzed using Atlas.ti. Expectations were assessed through analysis of responses to hypothetical scenarios designed to help interviewees think through the implications of this emerging technique in the contexts of research and public health. Results: Our analysis reveals a wide range of imagined responsibilities, capabilities, and trustworthiness of researchers and public health agencies. Specifically, many respondents expect researchers and public health agencies to use HIV ME carefully and maintain transparency about how data will be used. Informed consent was discussed as an important opportunity for notification of privacy risks. Furthermore, some respondents wished that public health agencies were held to the same form of oversight and accountability represented by informed consent in research. Conclusions: To prevent HIV ME from becoming a barrier to testing or a source of public mistrust, the sense of vulnerability expressed by some respondents must be addressed. In research, informed consent is an obvious opportunity for this. Without giving specimen donors a similar opportunity to opt out, public health agencies may find it difficult to adopt HIV ME without deterring testing and treatment.

Disposition toward privacy and information disclosure in the context of emerging health technologies.

OBJECTIVE: We sought to present a model of privacy disposition and its development based on qualitative research on privacy considerations in the context of emerging health technologies. MATERIALS AND METHODS: We spoke to 108 participants across 44 interviews and 9 focus groups to understand the range of ways in which individuals value (or do not value) control over their health information. Transcripts of interviews and focus groups were systematically coded and analyzed in ATLAS.ti for privacy considerations expressed by respondents. RESULTS: Three key findings from the qualitative data suggest a model of privacy disposition. First, participants described privacy related behavior as both contextual and habitual. Second, there are motivations for and deterrents to sharing personal information that do not fit into the analytical categories of risks and benefits. Third, philosophies of privacy, often described as attitudes toward privacy, should be classified as a subtype of motivation or deterrent. DISCUSSION: This qualitative analysis suggests a simple but potentially powerful conceptual model of privacy disposition, or what makes a person more or less private. Components of privacy disposition are identifiable and measurable through self-report and therefore amenable to operationalization and further quantitative inquiry. CONCLUSIONS: We propose this model as the basis for a psychometric instrument that can be used to identify types of privacy dispositions, with potential applications in research, clinical practice, system design, and policy.

How Could Commercial Terms of Use and Privacy Policies Undermine Informed Consent in the Age of Mobile Health?

Granular personal data generated by mobile health (mHealth) technologies coupled with the complexity of mHealth systems creates risks to privacy that are difficult to foresee, understand, and communicate, especially for purposes of informed consent. Moreover, commercial terms of use, to which users are almost always required to agree, depart significantly from standards of informed consent. As data use scandals increasingly surface in the news, the field of mHealth must advocate for user-centered privacy and informed consent practices that motivate patients' and research participants' trust. We review the challenges and relevance of informed consent and discuss opportunities for creating new standards for user-centered informed consent processes in the age of mHealth.

Characteristics Of Likely Precision Medicine Initiative Participants Drawn From A Large Blood Donor Population.

A goal of the Precision Medicine Initiative All of Us Research Program (AoURP) is recruitment of participants who reflect the diversity of the US. Recruitment from among blood bank donors, which may better reflect the demographic makeup of local communities, is one proposed strategy. We evaluated this strategy by analyzing the results of a survey of San Diego Blood Bank donors conducted in November 2015. Whites were more likely than nonwhites to respond to the survey (7.1 percent versus 3.9 percent). However, race was not a significant predictor of interest in participating in precision medicine research. Using census data linked to donors' ZIP codes, we also found that people who indicated interest in research participation were more likely to come from regions with higher educational attainment. Although blood banks represent a viable recruitment strategy for AoURP, our findings indicate that bias toward inclusion of whites and more highly educated people persists.