Dataset Information

Public trust and global biobank networks.

ABSTRACT: BACKGROUND:Biobanks provide an important foundation for genomic and personalised medicine. In order to enhance their scientific power and scope, they are increasingly becoming part of national or international networks. Public trust is essential in fostering public engagement, encouraging donation to, and facilitating public funding for biobanks. Globalisation and networking of biobanking may challenge this trust. METHODS:We report the results of an Australian study examining public attitudes to the networking and globalisation of biobanks. The study used quantitative and qualitative methods in conjunction with bioethical analysis in order to determine factors that may contribute to, and threaten, trust. RESULTS:Our results indicate a generally high level of trust in biobanks and in medical research more broadly. Key factors that can reduce perceived trustworthiness of biobanks are commercialisation and involvement in global networking. CONCLUSIONS:We conclude that robust ethical oversight and governance standards can both promote trust in global biobanking and ensure that this trust is warranted.

SUBMITTER: Dive L

PROVIDER: S-EPMC7429755 | biostudies-literature | 2020 Aug

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Public trust and global biobank networks.

Dive Lisa L Critchley Christine C Otlowski Margaret M Mason Paul P Wiersma Miriam M Light Edwina E Stewart Cameron C Kerridge Ian I Lipworth Wendy W

BMC medical ethics 20200815 1

<h4>Background</h4>Biobanks provide an important foundation for genomic and personalised medicine. In order to enhance their scientific power and scope, they are increasingly becoming part of national or international networks. Public trust is essential in fostering public engagement, encouraging donation to, and facilitating public funding for biobanks. Globalisation and networking of biobanking may challenge this trust.<h4>Methods</h4>We report the results of an Australian study examining publ ...[more]

PMID: 32799859

Similar Datasets

Project description:Many democratic governments recognize a duty to conserve environmental resources, including wild animals, as a public trust for current and future citizens. These public trust principles have informed two centuries of U.S.A. Supreme Court decisions and environmental laws worldwide. Nevertheless numerous populations of large-bodied, mammalian carnivores (predators) were eradicated in the 20th century. Environmental movements and strict legal protections have fostered predator recoveries across the U.S.A. and Europe since the 1970s. Now subnational jurisdictions are regaining management authority from central governments for their predator subpopulations. Will the history of local eradication repeat or will these jurisdictions adopt public trust thinking and their obligation to broad public interests over narrower ones? We review the role of public trust principles in the restoration and preservation of controversial species. In so doing we argue for the essential roles of scientists from many disciplines concerned with biological diversity and its conservation. We look beyond species endangerment to future generations' interests in sustainability, particularly non-consumptive uses. Although our conclusions apply to all wild organisms, we focus on predators because of the particular challenges they pose for government trustees, trust managers, and society. Gray wolves Canis lupus L. deserve particular attention, because detailed information and abundant policy debates across regions have exposed four important challenges for preserving predators in the face of interest group hostility. One challenge is uncertainty and varied interpretations about public trustees' responsibilities for wildlife, which have created a mosaic of policies across jurisdictions. We explore how such mosaics have merits and drawbacks for biodiversity. The other three challenges to conserving wildlife as public trust assets are illuminated by the biology of predators and the interacting behavioural ecologies of humans and predators. The scientific community has not reached consensus on sustainable levels of human-caused mortality for many predator populations. This challenge includes both genuine conceptual uncertainty and exploitation of scientific debate for political gain. Second, human intolerance for predators exposes value conflicts about preferences for some wildlife over others and balancing majority rule with the protection of minorities in a democracy. We examine how differences between traditional assumptions and scientific studies of interactions between people and predators impede evidence-based policy. Even if the prior challenges can be overcome, well-reasoned policy on wild animals faces a greater challenge than other environmental assets because animals and humans change behaviour in response to each other in the short term. These coupled, dynamic responses exacerbate clashes between uses that deplete wildlife and uses that enhance or preserve wildlife. Viewed in this way, environmental assets demand sophisticated, careful accounting by disinterested trustees who can both understand the multidisciplinary scientific measurements of relative costs and benefits among competing uses, and justly balance the needs of all beneficiaries including future generations. Without public trust principles, future trustees will seldom prevail against narrow, powerful, and undemocratic interests. Without conservation informed by public trust thinking predator populations will face repeated cycles of eradication and recovery. Our conclusions have implications for the many subfields of the biological sciences that address environmental trust assets from the atmosphere to aquifers.

Project description:The central focus of this research is the fast and crucial impact of the COVID-19 pandemic on a crucial psychological, relational, and political construct: trust. We investigate how the consequences of the pandemic, in terms of healthcare, state intervention and impositions, and daily life and habits, have affected trust in public institutions in Italy, at the time when the contagion was rapidly spreading in the country (early March 2020). In this survey, addressed to 4260 Italian citizens, we analyzed and measured such impact, focusing on various aspects of trust. This attention to multiple dimensions of trust constitutes the key conceptual advantage of this research, since trust is a complex and layered construct, with its own internal dynamics. In particular, the analysis focuses on how citizens attribute trust to Public Authorities, in relation to the management of the health crisis: with regard to the measures and guidelines adopted, the purposes pursued, the motivations that determine them, their capacity for involvement, and their effectiveness for the containment of the virus itself. A pandemic creates a bilateral need for trust, both in Public Authorities (they have to rely on citizens' compliance and must try to promote and maintain their trust in order to be effective) and in citizens, since they need to feel that somebody can do something, can (has the power to) protect them, to act at the needed collective level. We are interested to explore how this need for trust affects the attributional process, regarding both attitudes and the corresponding decisions and actions. The most striking result of this survey is the very high level of institutional trust expressed by respondents: 75% of them trust Italian public authorities to be able to deal with the COVID-19 emergency. This is in sharp contrast with the relatively low levels of institutional trust characteristic of Italy, both historically and in recent surveys. Moreover, the survey allowed the discrimination of several potential predictors for trust, thus emphasizing factors that, during this crisis, are exhibiting an anomalous impact on trust.

Dataset Information

Public trust and global biobank networks.

Publications

Public trust and global biobank networks.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets