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How to Design Consent for Health Data Research? An Analysis of Arguments of Solidarity.

Svenja Wiertz
Published in: Public health ethics (2023)
The article discusses the impact different concepts of solidarity can have on debates on models of consent for non-interventional research. It introduces three concepts of solidarity that have been referenced in bioethical debates: a purely descriptive concept, a concept that claims some derivative value for most but not all practices of solidarity, as well as a clearly normative concept where solidarity is tied to justice and taken to ground moral duties. It shows that regarding the rivalling models of study-specific consent, tiered consent and broad consent, the first two concepts can be taken to favour tiered consent while only normative solidarity supports a model of broad consent-or an argument to allow non-interventional research without requiring consent at all. As normative solidarity is tied to considerations of justice, however, the argument appears less straightforward than one might expect: It presupposes that the research contributes to overcoming existing social injustices.
Keyphrases
  • healthcare
  • mental health
  • public health
  • primary care
  • cross sectional
  • machine learning
  • big data
  • social media
  • health information