What Makes Research/Researchers Trustworthy? A workshop report (original) (raw)
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The Scottish Health Informatics Programme (SHIP) was a Scotland-wide research programme exploring ways of collecting, managing and analysing electronic patient records for health research. As part of the SHIP public engagement work stream, a series of eight focus groups and a stakeholder workshop were conducted to explore perceptions of the role, relevance and functions of trust (or trustworthiness) in relation to research practices. The findings demonstrate that the public’s relationships of trust and/or mistrust in science and research are not straightforward. This paper aims to move beyond simple descriptions of whether publics trust researchers, or in whom members of the public place their trust, and to explore more fully the bases of public trust/mistrust in science, what trust implies and equally what it means for research/researchers to be trustworthy. This has important implications for public engagement in interdisciplinary projects.
The Trustworthiness of Research
Knowledge and Reality, Transgression and Trustworthiness, 2011
The authors-a scientist, a community activist, and a philosopher and former university administrator-describe issues of trust surrounding traditional versus community-based research. We draw on our experiences in a research collaboration that engendered trust, created sound scientific data, and made real social change. We describe GRASS (Grass Roots Activism, Sciences and Scholarship) Routes, an initiative we have undertaken to promote trustworthiness as a core virtue of research, researchers, and research institutions.
Using the concept of “deserved trust” to strengthen the value and integrity of biomedical research
Accountability in Research
It is commonplace for science leaders and others to claim that the future of biomedical research rests in large part upon the public's trust. If true, it behooves the biomedical research community to understand how it avoids taking chances with that trust. This commentary, which builds upon comments of noted trust scholar Russell Hardin about how best to enjoy trust, assumes that the key to being trusted is deserving to be trusted. Thus, it proposes using "deserved trust" to identify ways that the public's trust in biomedical research could be better supported. Employing deserved trust to support the public's trust leads us to consider what it is that the biomedical research community should be trusted to do, examine the evidence about the effectiveness of current safeguards meant to assure that those things routinely get done, and identify new ways to equip individual researchers, research teams, and research institutions to assure that the public's trust in their research is deserved rather than misplaced.
Academic Medicine, 2009
To discover ways that the biomedical research community can foster the public's trust essential to sustain the research enterprise, in 2005 the authors and their colleagues convened a group of national leaders from sectors outside of academic science and health care that are also dependent on the public's trust. These leaders provided information about what their sectors do to earn the public's trust that is applicable to academic biomedical research institutions, as well as insights into ways academic research
2009
The Association of Clinical Research Professionals (ACRP) published a special issue of its journal, The Monitor, on measuring trust in clinical trials. 2 Those articles will be reviewed here, along with an exploration of some related writing on the issue. As the director of ACRP noted, earning the trust of the public is a multi-faceted process. Central to the goal of building trust is "that clinical research is performed responsibly, ethically, and professionally everywhere in the world." 3 Loss of trust Kenneth A. Getz presented the results of several public opinion polls that he provided as evidence of falling public trust and confidence in clinical research. 6 The percentage of those who would be willing to participate in clinical trials has dropped Trust is an essential feature of clinical research. Participants must trust researchers to act competently and with their best interests in mind. Researchers must trust one another to carry out their roles as determined by the protocol and according to the standards of best practice. Clinicians must trust that the results are reported accurately and completely. The public must trust that the whole enterprise is conducted appropriately and to the highest standards possible. However, there are concerns that trust may be waning, particularly public trust in clinical research. The media have reported on events ranging from controversies, problems, and fraud in clinical research. Numerous polls report on growing public mistrust of research. "Gone is the time when government and the public unhesitatingly trusted research institutions to serve as responsible advocates of the public welfare." 1 Research institutes are now searching for ways to restore and retain public trust and confidence in clinical research.
A paradigm for understanding trust and mistrust in medical research: The Community VOICES study
AJOB empirical bioethics
To promote justice in research practice and rectify health disparities, greater diversity in research participation is needed. Lack of trust in medical research is one of the most significant obstacles to research participation. Multiple variables have been identified as factors associated with research participant trust/mistrust. A conceptual model that provides meaningful insight into the interplay of factors impacting trust may promote more ethical research practice and provide an enhanced, actionable understanding of participant mistrust. A structured survey was developed to capture attitudes toward research conducted in emergency situations; this article focuses on items designed to assess respondents' level of trust or mistrust in medical research in general. Community-based interviews were conducted in English or Spanish with 355 New York City residents (white 42%, African American 29%, Latino 22%). Generally favorable attitudes toward research were expressed by a majorit...
Trust and the Ethical Conduct of Community-Engaged Research
European journal for person centered healthcare, 2017
Community-engaged research (CEnR), which emphasizes equal participation of academic and community partners in research, seeks to improve public trust in science. Unfortunately, there is a dearth of rigorous empirical research on trust as a core component of ethical conduct of CEnR. Drawing on data collected from a project on the ethics of CEnR, this commentary discusses benefits and risks of trust and uses the concept of embeddedness to explain how public trust in science may be increased. We argue that in developing and maintaining trust, partners must balance scientific rigor with community relevance and cultural appropriateness of research. They must strike a balance between working with the same limited pool of trusted partners, which can speed research but slow wider acceptance of science, and extending their trust to new partners, which can broaden acceptance of science but slow research. Practitioners may facilitate the development of trust in science by gradually expanding t...
Point of View: Four erroneous beliefs thwarting more trustworthy research
eLife
A range of problems currently undermines public trust in biomedical research. We discuss four erroneous beliefs that may prevent the biomedical research community from recognizing the need to focus on deserving this trust, and thus which act as powerful barriers to necessary improvements in the research process.