Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research

With the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several factors that influence patient trust and potential institutional approaches to building trustworthiness. Drawing on these findings, we suggest several considerations for research institutions seeking to cultivate long-term, trusting relationships with patients: (1) Address the role of history and experience on trust, (2) engage concerns about potential group harm, (3) address cultural values and communication barriers, and (4) integrate patient values and expectations into oversight and governance structures.     

Conducting Health Disparities Research with Criminal Justice Populations: Examining Research,Ethics, and Participation

This study explored the challenges of informed consent and understanding of the research process among Black and Latino men under community supervision (e.g., parole and/or probation). Between February and October 2012, we conducted cognitive face-to-face interviews using open-ended questions on the significant areas of research participation (i.e., the informed consent process, confidentiality, compensation, what is meant by human subject and clinical trials) among 259 men aged 35 to 67 under community supervision in Bronx, New York. Content analysis of the open-ended questions revealed limited knowledge concerning the understanding of research participation. The study participants appeared to generally understand concepts such as compensation after research participation and confidentiality. Participants demonstrated a lack of understanding of certain aspects of the research process—informed consent, human subject, Institutional Review Board, and clinical trials. These findings are informative to researchers conducting studies with criminal justice populations and Institutional Review Boards reviewing research studies.     

Social Capital, Television, and the "Mean World": Trust, Optimism, and Civic Participation

Robert Putnam argues that much of the decline in social trust and civic engagement in the United States can be attributed to increased television viewing. People who watch a lot of television are likely to believe that the real world is as "mean" as the "television world," and hence withdraw their trust from other people and decline to participate in civic affairs. Using data from the GSS and other surveys, I show that it is not television that makes people less trusting, but optimism for the future that makes people more trusting. When measures of optimism were used as determinants of trust in the estimation of a simultaneous equation model, the effects of television vanished. There is no support for the argument that television makes us less trusting because of the content of the shows we watch, or for the argument that television makes us withdraw from civic engagement because of the amount of time consumed by viewing. In addition, no evidence for specific cohort effects was found.     

Dysfunctional Behavior among Sales Representatives: The Effect of Supervisory Trust,Participation, and Information Controls

This study investigates the efficacy of supervisory trust, participation, and information controls in curbing dysfunctional salesperson behavior so that salesperson actions are in line with organizational goals. Using a sample of 210 salespeople, we develop and test a model incorporating supervisory trust, participation, information controls (output information, activity information, and capability information), and dysfunctional behavior. Output and activity information controls directly affect dysfunctional behavior, whereas capability information controls work positively through trust in the supervisor to reduce dysfunctional behavior. Providing sales representatives with information about their capabilities appears to enhance the supervisor–salesperson trust relationship. Results also indicate that salespeople’s supervisory participation is an effective lever for reducing dysfunctional salesperson behavior through the intervening role of trust in the supervisor.     

Embodied Methodologies,Participation, and the Art of Research

In this article, I make the case for scholarship potential at the overlap of art and research. Using the case of the psychological study of adolescence, I show that in order to produce findings of meaning from a critical psychological perspective, it is imperative to consider methodology and epistemology. With a focus on artistic embodied methodologies within participatory action research projects on adolescence, I explore how creative approaches can be an analytic process for knowledge production in the critical social sciences. I argue that the artistic approaches employed using embodied methodologies can be considered as a way to make meaning and that especially within participatory research, these approaches can strengthen validity. In response to the epistemological violence (Teo, 2010) of some conventional social psychological studies, participatory artistic embodied methodologies contribute to building liberatory knowledge and rigorous science.     

Decision-Making by Children and Young People in the Home: The Nurture of Trust,Participation and Independence

This article presents the findings of a qualitative research study of children and young people (aged 7–17 years) in Ireland. It seeks to investigate whether, for the children and young people involved, the home is a space where supportive, trusting family relationships can be nurtured; where independence grows with age; and where parents listen, discuss and explain decisions made. It furthermore outlines the views and experiences of parents with regard to children and young people’s participation in the home and will focus on relational and spatial aspects of child participation within the home. The study recognizes children and young people as social actors and is also informed by a relational and spatial approach to children’s participation which recognizes the respective roles and positions of children in facilitating child participation. The results indicate that age and issues of trust and tokenism were significant barriers in young people’s participation and decision making at home. Key enablers of children and young people’s participation included spaces where discussion can happen at home, good family relationships, being listened to by parents, trust and growing levels of independence with age, seeing decisions as fair and having the rationale for decisions explained to them by parents. Among suggestions for improvements the most important were designated family spaces for discussion, encouragement of active listening by parents, and promotion of explanation by adults of their decisions.     

The Risks,Benefits, and Ethics of Trauma-Focused Research Participation

With the rising interest in the field of trauma research, many Institutional Review Boards, policymakers, parents, and others grapple with the impact of trauma-research participation on research participants' well-being. Do individuals who participate in trauma-focused research risk experiencing lasting negative effects from participation? What are the potential benefits that may be gleaned from participation in this work? How can trauma research studies be designed ethically, minimizing the risk to participants? The following review seeks to answer these questions. This review indicates that most studies in this area have found that only a minority of participants experience distress when participating in trauma-focused research. Furthermore, these negative feelings tend to dissipate quickly over time, with the majority of participants self-appraising their participation as positive, rewarding, and beneficial to society. Design characteristics that may serve to minimize participants' risk of experiencing distress are discussed, as well as implications for public policy and future research.     

对精准医学批评的辨析

首先澄清我国网站上发表的两篇有关精准医学博文中事实上的错误和概念上的混淆。接着讨论了对精准医学提出的批评及对这些批评的分析。指出精准医学术语本身容易引起误解和引起人们过高的期望;对精准医学的论述和实施中存在基因决定论倾向, 即过分夸大基因在健康和疾病中的作用, 而忽视环境、生活方式、社会因素的作用, 这在政策上就会导致在发展高端医学与发展大众医学上不能保持平衡的问题;将巨大的资源投入精准医学研究未进行认真的成本-效果分析, 也未考虑到精准医学研究成果的公平可及, 以避免加深社会不公正问题;最后, 在吸引商家参与精准医学研究计划时未考虑如何力求避免可能引起的利益冲突问题。     

公众政治参与和地方政府信任的关系:一个有调节的中介模型

研究聚焦政府宣传教育,考察公众政治参与和地方政府信任的关系。对2061名有效被试进行问卷调查并分析。结果发现:(1)政治参与显著正向预测地方政府信任;(2)活动有用性评价在政治参与和地方政府信任间起部分中介作用;(3)宣传教育频率负向调节政治参与和有用性评价的关系以及有用性评价的中介效应。上述结果表明,多渠道提升公众政治参与意识,合理把握政府宣传教育频率是促进地方政府信任提高的可选策略。     

Scientific Research and the Public Trust

This essay analyzes the concept of public trust in science and offers some guidance for ethicists, scientists, and policymakers who use this idea defend ethical rules or policies pertaining to the conduct of research. While the notion that public trusts science makes sense in the abstract, it may not be sufficiently focused to support the various rules and policies that authors have tried to derive from it, because the public is not a uniform body with a common set of interests. Well-focused arguments that use public trust to support rules or policies for the conduct of research should specify (a) which public is being referred to (e.g. the general public or a specific public, such as a particular community or group); (b) what this public expects from scientists; (c) how the rule or policy will ensure that these expectations are met; and (d) why is it important to meet these expectations.     

Reliance,Trust, and Belief

Abstract

An adequate theory of the nature of belief should help us explain the most obvious features of belief as we find it. Among these features are: guiding action and reasoning non-inferentially; varying in strength in ways that are spontaneously experience-sensitive; ‘aiming at truth’ in some sense and being evaluable in terms of correctness and warrant; possessing inertia across time and constancy across contexts; sustaining expectations in a manner mediated by propositional content; shaping the formation and execution of plans; generalizing spontaneously projectively; and being independent of the will and resisting instrumentalization. Using the method of ‘creature construction’, I attempt to show how we can build an attitude with these features step-by-step from simpler components, thereby avoiding the problems of regress or circularity affecting a number of influential accounts of belief.     

Trust,Reliance, and Democracy

Abstract

From the perspective of philosophy and political science it is often pointed out that trust is of central value for democracy. The paper critically examines this claim and argues that we should not overestimate the role of trust in democracy. In order to do that, I argue for a specific understanding of the notion of trust that appropriately accounts for the distinction between trust and mere reliance. In a second step, I argue that we have no reason to put this kind of trust in our elected officials and representatives, but should instead focus on legislative and institutional ways to make sure that they are reliable in particular respects. After contrasting my suggestion with the position of Hardin, I point to two advantages of my account: (1) The avoidance of political analysis through the lens of trust allows us to react more flexibly to unforeseen circumstances and resist populist attempts to emotionalize public debates; (2) at the same time, diffusing the tension between trust and civic vigilance solves a systematic problem in political philosophy. In a concluding section, I briefly discuss the question whether there is an alternative role for trust to play in the field of politics.     

The Ethics of Smart Pills and Self-Acting Devices: Autonomy,Truth-Telling,and Trust at the Dawn of Digital Medicine

Digital medicine is a medical treatment that combines technology with drug delivery. The promises of this combination are continuous and remote monitoring, better disease management, self-tracking, self-management of diseases, and improved treatment adherence. These devices pose ethical challenges for patients, providers, and the social practice of medicine. For patients, having both informed consent and a user agreement raises questions of understanding for autonomy and informed consent, therapeutic misconception, external influences on decision making, confidentiality and privacy, and device dependability. For providers, digital medicine changes the relationship where trust can be verified, clinicians can be monitored, expectations must be managed, and new liability risks may be assumed. Other ethical questions include direct third-party monitoring of health treatment, affordability, and planning for adverse events in the case of device malfunction. This article seeks to lay out the ethical landscape for the implementation of such devices in patient care.