Consent and confidentiality in the light of recent demands for data sharing

G Williams, I Pigeot - Biometrical journal, 2017 - Wiley Online Library
G Williams, I Pigeot
Biometrical journal, 2017Wiley Online Library
Many attempts have been made to formalize ethical requirements for research. Among the
most prominent mechanisms are informed consent requirements and data protection
regimes. These mechanisms, however, sometimes appear as obstacles to research. In this
opinion paper, we critically discuss conventional approaches to research ethics that
emphasize consent and data protection. Several recent debates have highlighted other
important ethical issues and underlined the need for greater openness in order to uphold the …
Many attempts have been made to formalize ethical requirements for research. Among the most prominent mechanisms are informed consent requirements and data protection regimes. These mechanisms, however, sometimes appear as obstacles to research. In this opinion paper, we critically discuss conventional approaches to research ethics that emphasize consent and data protection. Several recent debates have highlighted other important ethical issues and underlined the need for greater openness in order to uphold the integrity of health‐related research. Some of these measures, such as the sharing of individual‐level data, pose problems for standard understandings of consent and privacy. Here, we argue that these interpretations tend to be overdemanding: They do not really protect research subjects and they hinder the research process. Accordingly, we suggest another way of framing these requirements. Individual consent must be situated alongside the wider distribution of knowledge created when the actions, commitments, and procedures of researchers and their institutions are opened to scrutiny. And instead of simply emphasizing privacy or data protection, we should understand confidentiality as a principle that facilitates the sharing of information while upholding important safeguards. Consent and confidentiality belong to a broader set of safeguards and procedures to uphold the integrity of the research process.
Wiley Online Library
以上显示的是最相近的搜索结果。 查看全部搜索结果