Adjusting the focus: A public health ethics approach to data research

Ballantyne, Angela

doi:10.1111/bioe.12551

Cited by 48 publications

(43 citation statements)

References 0 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…In bioethics, as in medical law, there have been some notable recent movements towards thinking about legal, ethical and policy obligations at the community and social level. [39][40][41] In the context of a pandemic, these kinds of public, community or wider social considerations are the more important. To be clear, to think in broader community terms is not to abandon the individual and their moral and legal specialness-far from it.…”

Section: Discussionmentioning

confidence: 99%

Tragic choices in intensive care during the COVID-19 pandemic: on fairness, consistency and community

2020

View full text Add to dashboard Cite

Tragic choices arise during the COVID-19 pandemic when the limited resources made available in acute medical settings cannot be accessed by all patients who need them. In these circumstances, healthcare rationing is unavoidable. It is important in any healthcare rationing process that the interests of the community are recognised, and that decision-making upholds these interests through a fair and consistent process of decision-making. Responding to recent calls (1) to safeguard individuals’ legal rights in decision-making in intensive care, and (2) for new authoritative national guidance for decision-making, this paper seeks to clarify what consistency and fairness demand in healthcare rationing during the COVID-19 pandemic, from both a legal and ethical standpoint. The paper begins with a brief review of UK law concerning healthcare resource allocation, considering how community interests and individual rights have been marshalled in judicial deliberation about the use of limited health resources within the National Health Service (NHS). It is then argued that an important distinction needs to be drawn between procedural and outcome consistency, and that a procedurally consistent decision-making process ought to be favoured. Congruent with the position that UK courts have adopted for resource allocation decision-making in the NHS more generally, specific requirements for a procedural framework and substantive triage criteria to be applied within that framework during the COVID-19 pandemic are considered in detail.

show abstract

Section: Discussionmentioning

confidence: 99%

Tragic choices in intensive care during the COVID-19 pandemic: on fairness, consistency and community

2020

View full text Add to dashboard Cite

show abstract

“…These potential harms apply even when data are anonymized, because of potential group harms be it by geography, disease or ethnicity. Some have voiced concerns over potential harmful uses that could result from stigma and discriminatory uses by employers or insurance companies [14,27]. Hence, although the primary role is to promote data sharing, DACs should also be aware of potential group harms and when such risks are more than minimal, data reuse should not be allowed.…”

Section: Main Textmentioning

confidence: 99%

“…Data sharing, at least in two important respects, has similar characteristics to epidemiology, LHS and public health research: the benefits and risks of data sharing pertain to groups rather than to individuals, and data sharing is about accessing and processing vast volumes of data and there are minimal additional risks to a data subject. Taken together, the more suitable ethical approach to data sharing should be that of public health ethics instead of research ethics [14].…”

Section: Ethical Framework For Reviewmentioning

confidence: 99%

“…Therefore it has been argued that an ethical framework for learning healthcare systems is public health ethics [13]. By the same token, it has been suggested that data sharing should be governed by the principles of public health ethics, rather than research ethics [14]. This is because public health ethics focuses on public benefit, proportionality, accountability, equity and trust while research ethics tends to focus on consent and individual interests [14].…”

Section: Introductionmentioning

confidence: 99%

“…By the same token, it has been suggested that data sharing should be governed by the principles of public health ethics, rather than research ethics [14]. This is because public health ethics focuses on public benefit, proportionality, accountability, equity and trust while research ethics tends to focus on consent and individual interests [14]. There are significant similarities between public health activities, epidemiological research and data sharing in terms of goals, benefits and risks associated with these activities.…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Data Access Committees

Cheah

Piasecki

2020

BMC Med Ethics

View full text Add to dashboard Cite

Background: Sharing de-identified individual-level health research data is widely promoted and has many potential benefits. However there are also some potential harms, such as misuse of data and breach of participant confidentiality. One way to promote the benefits of sharing while ameliorating its potential harms is through the adoption of a managed access approach where data requests are channeled through a Data Access Committee (DAC), rather than making data openly available without restrictions. A DAC, whether a formal or informal group of individuals, has the responsibility of reviewing and assessing data access requests. Many individual groups, consortiums, institutional and independent DACs have been established but there is currently no widely accepted framework for their organization and function. Main text: We propose that DACs, should have the role of both promotion of data sharing and protection of data subjects, their communities, data producers, their institutions and the scientific enterprise. We suggest that data access should be granted by DACs as long as the data reuse has potential social value and provided there is low risk of foreseeable harms. To promote data sharing and to motivate data producers, DACs should encourage secondary uses that are consistent with the interests of data producers and their own institutions. Given the suggested roles of DACs, there should be transparent, simple and clear application procedures for data access. The approach to review of applications should be proportionate to the potential risks involved. DACs should be established within institutional and legal frameworks with clear lines of accountability, terms of reference and membership. We suggest that DACs should not be modelled after research ethics committees (RECs) because their functions and goals of review are different from those of RECs. DAC reviews should be guided by the principles of public health ethics instead of research ethics. Conclusions: In this paper we have suggested a framework under which DACs should operate, how they should be organised, and how to constitute them.

show abstract

The ethical challenges of artificial intelligence‐driven digital pathology

McKay

Williams

Prestwich

et al. 2022

The Journal of Pathology CR

View full text Add to dashboard Cite

Digital pathologythe digitalisation of clinical histopathology services through the scanning and storage of pathology slideshas opened up new possibilities for health care in recent years, particularly in the opportunities it brings for artificial intelligence (AI)-driven research. Recognising, however, that there is little scholarly debate on the ethics of digital pathology when used for AI research, this paper summarises what it sees as four key ethical issues to consider when deploying AI infrastructures in pathology, namely, privacy, choice, equity, and trust. The themes are inspired from the authors' experience grappling with the challenge of deploying an ethical digital pathology infrastructure to support AI research as part of the National Pathology Imaging Cooperative (NPIC), a collaborative of universities, hospital trusts, and industry partners largely located across the North of England. Though focusing on the UK case, internationally, few pathology departments have gone fully digital, and so the themes developed here offer a heuristic for ethical reflection for other departments currently making a similar transition or planning to do so in the future. We conclude by promoting the need for robust public governance mechanisms in AI-driven digital pathology.

show abstract

Adjusting the focus: A public health ethics approach to data research

Cited by 48 publications

References 0 publications

Tragic choices in intensive care during the COVID-19 pandemic: on fairness, consistency and community

Tragic choices in intensive care during the COVID-19 pandemic: on fairness, consistency and community

Data Access Committees

The ethical challenges of artificial intelligence‐driven digital pathology

Contact Info

Product

Resources

About