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The Role of Social Value in Data-Intensive Health Research
Tessa I van Rijssel1,2, Sam H A Muller3,4, Marianne Boenink1
1Department of IQ Health, Radboud University Medical Center, Nijmegen, the Netherlands.
Bioethics
|July 16, 2026
Summary
Data-intensive health research faces consent challenges. Social value, traditionally justifying risk, is now used to lower consent standards, impacting data control. Alternative involvement methods are proposed.
Area of Science:
- Bioethics
- Health Informatics
- Research Ethics
Background:
- Data-intensive health research presents unique informed consent challenges.
- Traditional consent models are strained by large data volumes, open-ended research, and secondary data use.
- Developments like the European Health Data Space (EHDS) explore lower consent standards, such as opt-out systems.
Purpose of the Study:
- To examine the multifaceted roles of social value in research ethics.
- To analyze how social value is increasingly used to justify lower consent standards in data-intensive research.
- To propose alternative mechanisms for data contributor control and involvement.
Main Methods:
- Conceptual analysis of the role of social value in research ethics.
- Examination of three distinct functions of social value: preventing research waste, justifying participant risk, and lowering consent standards.
- Discussion of the ethical implications of using social value to reduce consent requirements.
Main Results:
- Social value traditionally justifies research and participant risk.
- A distinct, additional function of social value is emerging to justify lower consent standards.
- Lowering consent standards impacts data contributors' control over their data.
Conclusions:
- The use of social value to lower consent standards requires careful ethical consideration.
- Alternative forms of meaningful involvement and control for data contributors are essential.
- Balancing research advancement with individual data rights is critical in data-intensive health research.
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