Research participants’ perceptions and views on consent for biobank research: a review of empirical data and ethical analysis

BMC Medical Ethics 16 (1):60 (2015)
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Appropriate information and consent has been one of the most intensely discussed topics within the context of biobank research. In parallel to the normative debate, many socio-empirical studies have been conducted to gather experiences, preferences and views of patients, healthy research participants and further stakeholders. However, there is scarcity of literature which connects the normative debate about justifications for different consent models with findings gained in empirical research. In this paper we discuss findings of a limited review of socio-empirical research on patients’ and healthy research participants’ experiences and views regarding consent to biobank research in light of ethical principles for appropriate information and consent
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Archival date: 2015-09-23
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References found in this work BETA
The Birth of Bioethics.Jonsen, Albert R.
Seeking Consent to Genetic and Genomic Research in a Rural Ghanaian Setting: A Qualitative Study of the MalariaGEN Experience. [REVIEW]Tindana, Paulina; Bull, Susan; Amenga-Etego, Lucas; de Vries, Jantina; Aborigo, Raymond; Koram, Kwadwo; Kwiatkowski, Dominic & Parker, Michael

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Citations of this work BETA
Dynamic Consent: A Potential Solution to Some of the Challenges of Modern Biomedical Research.Budin-Ljøsne, Isabelle; Teare, Harriet J. A.; Kaye, Jane; Beck, Stephan; Bentzen, Heidi Beate; Caenazzo, Luciana; Collett, Clive; D’Abramo, Flavio; Felzmann, Heike; Finlay, Teresa; Javaid, Muhammad Kassim; Jones, Erica; Katić, Višnja; Simpson, Amy & Mascalzoni, Deborah
Broad Consent for Biobanks is Best – Provided It is Also Deep.Mikkelsen, Rasmus Bjerregaard; Gjerris, Mickey; Waldemar, Gunhild & Sandøe, Peter
Biobanking in Israel 2016–17; Expressed Perceptions Versus Real Life Enrollment.Koren, Gideon; Beller, Daniella; Laifenfeld, Daphna; Grossman, Iris & Shalev, Varda

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