Asserting the public interest in health data
On the ethics of data governance for biobanks and insurers
Bibliographic Data
| ID | 5260813 |
|---|---|
| Authors | Kathryne Metcalf (0000-0001-6529-1695, University of California San Diego, corresponding author), J Sadowski (0000-0002-0324-708X, Monash University) |
| Year | 2024 |
| Volume | 11 |
| Issue | 4 |
| Publication date | 2024-12-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Big Data & Society (JOURNAL) |
| Journal identifiers | ISSN: 2053-9517 • E-ISSN: 2053-9517 |
| Publisher | SAGE Publications Inc (PUBLISHER) |
| DOI | 10.1177/20539517241290215 |
| OpenAlex | W4403434082 |
| Language | EN |
| Citations received | 5 |
| References cited | 53 |
Recent reporting has revealed that the UK Biobank (UKB)-a large, publicly-funded research database containing highly-sensitive health records of over half a million participants-has shared its data with private insurance companies seeking to develop actuarial AI systems for analyzing risk and predicting health. While news reports have characterized this as a significant breach of public trust, the UKB contends that insurance research is "in the public interest," and that all research participants are adequately protected from the possibility of insurance discrimination via data de-identification. Here, we contest both of these claims. Insurers use population data to identify novel categories of risk, which become fodder in the production of black-boxed actuarial algorithms. The deployment of these algorithms, as we argue, has the potential to increase inequality in health and decrease access to insurance. Importantly, these types of harms are not limited just to UKB participants: instead, they are likely to proliferate unevenly across various populations within global insurance markets via practices of profiling and sorting based on the synthesis of multiple data sources, alongside advances in data analysis capabilities, over space/time. This necessitates a significantly expanded understanding of the publics who must be involved in biobank governance and data-sharing decisions involving insurers
Biobank · Business · Corporate governance · Data governance · Data quality · Engineering ethics · Governmentality · Health care · Health data · Internet privacy · Law and economics · Political science · Politics · Public health · Public interest · Public relations · Sociology · Biomedical Ethics and Regulation · Computer Science · Engineering · Ethics in Clinical Research · Health Systems, Economic Evaluations, Quality of Life · Law · Medicine · Public Administration · Finance · Marketing
Politics, economics, and welfare
Promising Genomics
Data-Centric Biology
Contribution of risk factors to excess mortality in isolated and lonely individuals
The UK Biobank resource with deep phenotyping and genomic data
The Care Principles for Indigenous Data Governance
A Theory of Justice
Greenspace and mortality in the U.K. Biobank
Affective Economies in Blood Banks and Biobanks
Enacting Actuarial Fairness in Insurance
Health policy counterpublics
Total life insurance
The Tobacco Industry, Researchers, and Ethical Access to UK Biobank
An old debate renewed
The Public Interest Reconsidered
"Political Science and "The Public Interest
The Common Good and the Public Interest
Species of Biocapital
Theorizing the Bioeconomy
Public perceptions of good data management
Disambiguating the benefits and risks from public health data in the digital economy
Who benefits and how? Public expectations of public benefits from data-intensive health research
The causal effects of education on health outcomes in the UK Biobank
Insurance as Governance
Beyond Public and Private
Risk, value, vitality
| Unique citing works | 5 |
|---|---|
| Citations per year | 2,5 |
| Citation span | 2024 - 2026 (3) |
| Citation velocity | current |
| Highly cited | No |
| Citation types | Neutral: 4 |