Linking Survey and Twitter Data: Informed Consent, Disclosure, Security, and Archiving.
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ABSTRACT:
SUBMITTER: Sloan L
PROVIDER: S-EPMC7049949 | biostudies-literature | 2020 Feb-Apr
REPOSITORIES: biostudies-literature
Publications
Linking Survey and Twitter Data: Informed Consent, Disclosure, Security, and Archiving.
Sloan Luke L Jessop Curtis C Al Baghal Tarek T Williams Matthew M
Journal of empirical research on human research ethics : JERHRE 20190621 1-2
Linked survey and Twitter data present an unprecedented opportunity for social scientific analysis, but the ethical implications for such work are complex-requiring a deeper understanding of the nature and composition of Twitter data to fully appreciate the risks of disclosure and harm to participants. In this article, we draw on our experience of three recent linked data studies, briefly discussing the background research on data linkage and the complications around ensuring informed consent. P ...[more]
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Project description:BackgroundThe legal and ethical guidelines of psychological professional associations stipulate that informed consent by patients is an essential prerequisite for psychotherapy. Despite this awareness of the importance of informed consent, there is little empirical evidence on what psychotherapists' attitudes towards informed consent are and how informed consent is implemented in psychotherapeutic practice.Methods155 psychotherapists in Switzerland completed an online survey assessing their attitudes regarding informed consent.ResultsAmong the surveyed psychotherapists, there was a high consensus on important information that should be communicated to patients in the context of informed consent. Almost all psychotherapists rated confidentiality and its exemptions (95%) and self-determined decision-making (97%) as important. The importance to disclose information regarding fees and the empirical effectiveness of the provided treatment, were both seen as important by more than 80% of participants. The disclosure of personal information about the therapist was rated as important by 60%. Other aspects, which are not direct components of informed consent but rather overarching goals, were also evaluated rather homogeneously: self-determined decision making of the patient was rated as important by almost all of the surveyed psychotherapists (97%). The following components were also judged as important by a majority of the participants: promotion of hope (80%) and discussion of treatment goals (93%). Most psychotherapists described the implementation of informed consent as an ongoing process, rather than a one-time event during the first session of therapy. Therapists' age, postgraduate training, treated patient group, and setting influenced attitudes towards informed consent.ConclusionsThe present study shows that informed consent is perceived by psychotherapists as both a challenge and a resource. The implementation of informed consent in psychotherapy requires further research from a clinical and ethical perspective.
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