title: First the facts, then the values? Implicit normativity in evidence-based decision aids for shared decision-making.
abstract: This paper focuses on the ethics of constructing and using a specific evidence-based decision aid that aims to contribute to clinical shared decision-making processes. Results of this integrated empirical ethics study demonstrate how both the production and presentation of scientific information in an evidence-based decision-support contain implicit presuppositions and values, which pre-structure the moral environment of the shared decision-making process. As a consequence, the evidence-based decision support did not only support the decision-making process; it also transformed it in a morally significant way. This phenomenon undermines the assumption within much of the literature on patient autonomy and shared decision-making implying that information disclosure is a conditional requirement before patient autonomy and shared decision-making even starts. The central point of this paper is that decision aids and evidence-based medicine are not value-free and that patient autonomy and shared decision-making are already influenced during the production and presentation of scientific information. Consequences for both the development of decision-aids and the practice of shared decision-making are discussed.
authors.affiliation: Department of Medical Decision Making, Leiden University Medical Center, The Netherlands. b.molewijk@hes.unimaas.nl
authors.forename: Bert
authors.initials: B
authors.lastname: Molewijk
authors.forename: Anne M
authors.initials: AM
authors.lastname: Stiggelbout
authors.forename: Wilma
authors.initials: W
authors.lastname: Otten
authors.forename: Heleen M
authors.initials: HM
authors.lastname: Dupuis
authors.forename: Job
authors.initials: J
authors.lastname: Kievit
mesh_terms: D003657:Decision Making; D004992:Ethics, Medical; D019317:Evidence-Based Medicine; D006801:Humans; D007258:Informed Consent; D008017:Life Expectancy; D026684:Personal Autonomy; D010817:Physician-Patient Relations; D013514:Surgical Procedures, Operative / Q000523:psychology; D014342:Truth Disclosure