The Ethical Implications of Big Data Research in Public Health: “Big Data Ethics by Design” in the UK‐REACH Study

Abstract

In this article, we analyze legal and ethical issues raised in Big Data health research projects in the Covid‐19 era and consider how these issues might be addressed in ways that advance positive values (e.g., furtherance of respect for persons and accordance with relevant legal frameworks) while mitigating or eliminating any negative aspects (e.g., exacerbation of social inequality and injustice). We apply this analysis specifically to UK‐REACH (The United Kingdom Research Study into Ethnicity and Covid‐19 Outcomes in Healthcare Workers), a project with which we are involved. We argue that Big Data projects like UK‐REACH can be conducted in an ethically robust manner and that funders and sponsors ought to encourage similar projects to drive better evidence‐based public policy in public health. As part of this, we advocate that a Big Data ethics‐by‐design approach be undertaken when such projects are constructed. This principle extends the work of those who advocate ethics by design by addressing prominent issues in Big Data health research projects; it holds that ethical values and principles in Big Data health research projects are best adhered to when they are already integrated into the project aims and methods at the design stage. In advocating this principle, we present a unique perspective regarding pressing ethical problems around large‐scale, data‐driven Covid‐19 research, as well as legal issues associated with processing ostensibly anonymized health data.

“Data makes the story come to life:” understanding the ethical and legal implications of Big Data research involving ethnic minority healthcare workers in the United Kingdom—a qualitative study

“…For Big Data projects to mitigate these concerns of mistrust, and to garner sustained trust by publics from the design stage, researchers ought to identify the drivers of mistrust relevant to that particular project and use an ethically informed approach to address and overcome mistrust. This is an approach we have outlined in more detail in our earlier article [32]. Such an ethically informed approach, which we term a "Big Data Ethics by Design" approach, incorporates the appropriate management and handling of data, as well as the direct and close involvement of communities with interests pertinent to the research project, right from the outset.…”

“…Participant 21 put it that "even though GDPR isn't applying technically, […] we still need to be really careful with how that data is used and the conditions that are put around its transparency, who's looking at it, how it's disposed of and all those other things. " To this end, participants were broadly in support of the concept of dynamic anonymisation, meaning an ongoing watching brief and test of (re)identifiability that assesses what is identifiable by reference not just to what is identifiable in most contexts and vis-à-vis those to whom data are being or might be disclosed, but also to what is identifiable in conjunction with data which are readily available or may be available to anyone seeking to re-identify data [32].…”

“…Based on the foregoing discussion, we propose several practical recommendations to give effect to a "Big Data Ethics by Design" approach, focusing on the legal and ethical dimensions, that can help researchers gain and maintain trust in their research (Table 3) (see also [32,48] for related discussion of the policy implications of Big Data health research studies such as UK-REACH). We think this approach complements other emerging approaches such as ethics parallel research or embedded ethics [49,50] in that it not only ensures research teams consider these dimensions right at the design phase of their study and then throughout the study's lifecycle and makes them an integral part, but it also places explicit focus on the Big Data-specific dimensions of a study in the area of health or public health, ensuring engagement, transparency, and sensitivity to factors of trust and mistrust in data usage are addressed robustly.…”

A Brief Review of Big Data in Healthcare: Challenges and Issues, Recent Developments, and Future Directions

“…Patients should have knowledge when utilized their data, sharing and be informed about potential risks and benefits. Data ownership and sharing are complex legal issues, and clear guidelines and agreements are needed when collaborating with stakeholders like healthcare contributors, researchers, and technology companies transparent and secure data sharing frameworks can ensure responsible data sharing while protecting patient privacy [22].…”

Interactive Design and Management Method of Art Teaching System in Colleges and Universities under the Background of Big Data

“…With the popularization of network, the national education department also began to increase the capital investment and integrated resources to conduct the information of school art teaching [5,6]. For example, the construction of campus information management systems such as campus network and school automation o ce system keeps on moving.…”