Beier, Katharina

[["dc.bibliographiccitation.artnumber","90"],["dc.bibliographiccitation.issue","1"],["dc.bibliographiccitation.journal","BMC Medical Informatics and Decision Making"],["dc.bibliographiccitation.volume","19"],["dc.contributor.author","Beier, Katharina"],["dc.contributor.author","Schweda, Mark"],["dc.contributor.author","Schicktanz, Silke"],["dc.date.accessioned","2019-07-09T11:51:13Z"],["dc.date.available","2019-07-09T11:51:13Z"],["dc.date.issued","2019"],["dc.description.abstract","Background Data-intensive research in medicine and healthcare such as health-related big data research (HBDR) implies that data from clinical routine, research and patient-reported data, but also non-medical social or demographic data, are aggregated and linked in order to optimize biomedical research. In this context, notions of patient participation and involvement are frequently invoked to legitimize this kind of research and improve its governance. The aim of this debate paper is to critically examine the specific use and ethical role of participatory concepts in the context of HBDR and data-intensive research in medicine and healthcare. Discussion We introduce basic conceptual distinctions for the understanding of participation by looking at relevant fields of application in politics, bioethics and medical research. Against this backdrop, we identify three paradigmatic participatory roles that patients/subjects are assigned within the field of HBDR: participants as providers of biomaterials and data, participants as administrators of their own research participation and participants as (co-)principal investigators. We further illustrate these roles by exemplary data-intensive research-initiatives. Our analysis of these initiatives and their respective participatory promises reveals specific ethical and practical shortcomings and challenges. Central problems affecting, amongst others, ethical and methodological research standards, as well as public trust in research, result from the negligence of essential political-ethical dimensions of genuine participation. Conclusions Based on the conceptual distinctions introduced, we formulate basic criteria for justified appeals to participatory approaches in HBDR and data-intensive research in medicine and healthcare in order to overcome these shortcomings. As we suggest, this is not only a matter of conceptual clarity, but a crucial requirement for maintaining ethical standards and trust in HBDR and related medical research."],["dc.identifier.doi","10.1186/s12911-019-0799-7"],["dc.identifier.pmid","31023321"],["dc.identifier.purl","https://resolver.sub.uni-goettingen.de/purl?gs-1/16075"],["dc.identifier.uri","https://resolver.sub.uni-goettingen.de/purl?gro-2/59899"],["dc.language.iso","en"],["dc.notes.intern","Merged from goescholar"],["dc.rights","CC BY 4.0"],["dc.rights.uri","https://creativecommons.org/licenses/by/4.0"],["dc.title","Taking patient involvement seriously: a critical ethical analysis of participatory approaches in data-intensive medical research"],["dc.type","journal_article"],["dc.type.internalPublication","yes"],["dc.type.version","published_version"],["dspace.entity.type","Publication"]]

[["dc.bibliographiccitation.firstpage","411"],["dc.bibliographiccitation.issue","3"],["dc.bibliographiccitation.journal","Medicine, Health Care and Philosophy"],["dc.bibliographiccitation.lastpage","422"],["dc.bibliographiccitation.volume","19"],["dc.contributor.author","Beier, Katharina"],["dc.contributor.author","Jordan, Isabella"],["dc.contributor.author","Wiesemann, Claudia"],["dc.contributor.author","Schicktanz, Silke"],["dc.date.accessioned","2017-10-16T10:54:29Z"],["dc.date.available","2017-10-16T10:54:29Z"],["dc.date.issued","2016"],["dc.description.abstract","Bioethicists tend to focus on the individual as the relevant moral subject. Yet, in highly complex and socially differentiated healthcare systems a number of social groups, each committed to a common cause, are involved in medical decisions and sometimes even try to influence bioethical discourses according to their own agenda. We argue that the significance of these collective actors is unjustifiably neglected in bioethics. The growing influence of collective actors in the fields of biopolitics and bioethics leads us to pursue the question as to how collective moral claims can be characterized and justified. We pay particular attention to elaborating the circumstances under which collective actors can claim ‘collective agency.’ Specifically, we develop four normative-practical criteria for collective agency in order to determine the conditions that must be given to reasonably speak of ‘collective autonomy’. For this purpose, we analyze patient organizations and families, which represent two quite different kinds of groups and can both be conceived as collective actors of high relevance for bioethical practice. Finally, we discuss some practical implications and explain why the existence of a shared practice of trust is of immediate normative relevance in this respect."],["dc.identifier.doi","10.1007/s11019-016-9695-4"],["dc.identifier.gro","3146751"],["dc.identifier.uri","https://resolver.sub.uni-goettingen.de/purl?gro-2/9426"],["dc.language.iso","en"],["dc.notes.status","final"],["dc.relation.issn","1386-7423"],["dc.title","Understanding collective agency in bioethics"],["dc.type","journal_article"],["dc.type.internalPublication","unknown"],["dc.type.peerReviewed","no"],["dspace.entity.type","Publication"]]

[["dc.bibliographiccitation.firstpage","163"],["dc.bibliographiccitation.lastpage","200"],["dc.contributor.author","Beier, Katharina"],["dc.contributor.author","Jordan, Isabella"],["dc.contributor.author","Schicktanz, Silke"],["dc.contributor.author","Wiesemann, Claudia"],["dc.date.accessioned","2017-10-16T10:54:27Z"],["dc.date.available","2017-10-16T10:54:27Z"],["dc.date.issued","2015"],["dc.identifier.doi","10.1007/978-3-658-11074-1_5"],["dc.identifier.gro","3146732"],["dc.identifier.uri","https://resolver.sub.uni-goettingen.de/purl?gro-2/9405"],["dc.notes.status","final"],["dc.publisher","Springer Fachmedien"],["dc.publisher.place","Wiesbaden"],["dc.relation.isbn","978-3-65811-073-4"],["dc.relation.ispartof","Autonomie und Vertrauen"],["dc.title","Familien und Patientenorganisationen als kollektive Akteure in der Bioethik: vernachlässigt und unterschätzt?"],["dc.type","book_chapter"],["dc.type.internalPublication","unknown"],["dc.type.peerReviewed","unknown"],["dspace.entity.type","Publication"]]