The Ethics Ecosystem: Personal Ethics, Network Governance and Regulating Actors Governing the Use of Social Media Research Data

Abstract

This paper examines the consequences of a culture of “personal ethics” when using new methodologies, such as the use of social media (SM) sites as a source of data for research. Using SM research as an example, this paper explores the practices of a number of actors and researchers within the “Ethics Ecosystem” which as a network governs ethically responsible research behaviour. In the case of SM research, the ethical use of this data is currently in dispute, as even though it is seemingly publically available, concerns relating to privacy, vulnerability, potential harm and consent blur the lines of responsible ethical research behaviour. The findings point to the dominance of a personal, bottom-up, researcher-led, ‘ethical barometer’ for making decisions regarding the permissibility of using SM data. We show that the use of different barometers by different researchers can lead to wide disparities in ethical practice - disparities which are compounded by the lack of firm guidelines for responsible practice of SM research. This has widespread consequences on the development of shared norms and understandings at all levels, and by all actors within the Ethics Ecosystem, and risks inconsistencies in their approaches to ethical decision-making. This paper argues that this governance of ethical behaviour by individual researchers perpetuates a negative cycle of academic practice that is dependent on subjective judgements by researchers themselves, rather than governed by more formalised academic institutions such as the research ethics committee and funding council guidelines.

Population health AI researchers’ perceptions of the public portrayal of AI: A pilot study

“…Recruitment. To identify UK researchers, a bibliometric search for UK publications reporting on health-related research using AI methodologies was conducted as per methods described previously (Samuel et al, 2019). Data were manually checked and cleaned by using web searches to check each data point (a specific author) for expertise and experience in the field of AI-associated population health research (n = 244 cleaned to n = 58).…”

Defining ethical standards for the application of digital tools to population health research

“…This lack of ethics scrutiny is compounded by inconsistent ethics guidelines for publishing such research in international peer-reviewed journals. 3 There is growing interest in population health research, which uses artificial intelligence-based methods. Such research draws on a range of clinical and non-clinical data to make predictions about health risks, such as identifying epidemics and monitoring disease spread.…”

“…We have argued previously that such behaviour is reinforced through an informal, research-governed process, which we termed an ethics ecosystem. 3 An ethics ecosystem is an interconnected network of researchers, research institutions and external bodies (publishers, funding bodies, professional associations and their policies) who participate equally in the promotion, evaluation and enforcement of ethically responsible research behaviour. However, the development of a stable ethics ecosystem in higher education institutions has become increasingly challenging in the areas of research which use innovative methods such as artificial intelligence.…”

“…As researchers strive to reach new shared understandings of ethical practice, a culture of personal ethics has emerged whereby researchers monitor their own (often different) decisions about how best to act ethically, without being subject to accountability or audit by other parts of the ethics ecosytem. 3 Normally, research ethics committees in higher education institutions are tasked with the role of ensuring ethics best practice for all research involving human participants. However, at least in the United Kingdom of Great Britain and Northern Ireland, a large proportion of health research, which uses artificial intelligence-based methods to analyse data is exempt from ethics committee scrutiny (G Samuel, Department of Global Health and Social Medicine, King's College London, England, author's unpublished observations, 2019).…”

Points of contention: Qualitative research identifying where researchers and research ethics committees disagree about consent waivers for secondary research with tissue and data

“…Even in the context of more traditional clinical research, RECs come under criticism from researchers on the grounds that they are secretive [ 18 , 19 ], inconsistent [ 20 , 21 ], slow [ 22 ], and the ethics review process is unduly burdensome [ 23 , 24 ]. There is a recently emerging literature on how RECs function and make decisions [ 15 , 25 – 30 ]. Our research adds to this growing literature and is particularly interesting because it compares the opinions of researchers and RECs, illuminating different perspectives on the review process, styles of ethical reasoning and issues of concern in relation to secondary research.…”