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

A Ballantyne - Bioethics, 2019 - Wiley Online Library
This paper contends that a research ethics approach to the regulation of health data
research is unhelpful in the era of population‐level research and big data because it results …

Views of ethical best practices in sharing individual-level data from medical and public health research: a systematic scoping review

S Bull, N Roberts, M Parker - Journal of Empirical Research …, 2015 - journals.sagepub.com
There is increasing support for sharing individual-level data generated by medical and
public health research. This scoping review of empirical research and conceptual literature …

Controversies between regulations of research ethics and protection of personal data: informed consent at a cross-road

E Gefenas, J Lekstutiene, V Lukaseviciene… - Medicine, Health Care …, 2022 - Springer
This paper explores some key discrepancies between two sets of normative requirements
applicable to the research use of personal data and human biological materials:(a) the data …

Reimagining research ethics to include environmental sustainability: a principled approach, including a case study of data-driven health research

G Samuel, C Richie - Journal of Medical Ethics, 2023 - jme.bmj.com
In this paper we argue the need to reimagine research ethics frameworks to include notions
of environmental sustainability. While there have long been calls for health care ethics …

A Belmont report for health data

E Parasidis, E Pike, D McGraw - New England Journal of …, 2019 - Mass Medical Soc
A Belmont Report for Health Data Just as indignities common in human-subjects research
led to the articulation of ethical principles in the Belmont Report 40 years ago, contemporary …

Best practices for ethical sharing of individual-level health research data from low-and middle-income settings

S Bull, PY Cheah, S Denny, I Jao… - Journal of Empirical …, 2015 - journals.sagepub.com
Sharing individual-level data from clinical and public health research is increasingly being
seen as a core requirement for effective and efficient biomedical research. This article …

What makes public health studies ethical? Dissolving the boundary between research and practice

DJ Willison, N Ondrusek, A Dawson, C Emerson… - BMC Medical …, 2014 - Springer
Background The generation of evidence is integral to the work of public health and health
service providers. Traditionally, ethics has been addressed differently in research projects …

Consent and the ethical duty to participate in health data research

A Ballantyne, GO Schaefer - Journal of medical ethics, 2018 - jme.bmj.com
The predominant view is that a study using health data is observational research and should
require individual consent unless it can be shown that gaining consent is impractical. But …

The promise of data science for health research in Africa

CA Adebamowo, S Callier, S Akintola… - Nature …, 2023 - nature.com
Data science health research promises tremendous benefits for African populations, but its
implementation is fraught with substantial ethical governance risks that could thwart the …

Health research with big data: time for systemic oversight

E Vayena, A Blasimme - The journal of law, medicine & …, 2018 - journals.sagepub.com
To address the ethical challenges in big data health research we propose the concept of
systemic oversight. This approach is based on six defining features (adaptivity, flexibility …