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No regrets: Young adult patients in psychiatry report positive reactions to biobank participation
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital.
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2017 (English)In: BMC Psychiatry, ISSN 1471-244X, E-ISSN 1471-244X, Vol. 17, article id 21Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Research in vulnerable individuals must insure voluntariness and minimize negative reactions caused by participation. This study aimed to describe consent and completion rate in young psychiatric patients in relation to study components, degree of disability and to compare response to research participation in patients and controls.

METHODS: Between 2012 and 2015, 463 patients with psychiatric disorders between the ages of 18-25 from the Dept. of General Psychiatry at Uppsala University Hospital and 105 controls were recruited to donate data and samples to a biobank. Consent and completion in relation to questionnaires, biological sampling of blood, saliva or feces, were monitored. Both groups were also asked about their perceived disability and how research participation affected them.

RESULTS: Most patients who participated consented to and completed questionnaires and blood sampling. The majority also consented to saliva sampling, while less than half consented to collect feces. Of those who gave consent to saliva and feces only half completed the sampling. Both patients and controls reported high voluntariness and were positive to research participation. Within the patient group, those with greater perceived disability reported greater distress while participating in research, but there was no difference in consent or completion rates or level of regret.

CONCLUSIONS: With the described information procedures, psychiatric patients, regardless of perceived disability, reported high voluntariness and did not regret participation in biobanking. Compared to questionnaires and blood sampling, given consent was reduced for feces and completion was lower for both saliva and feces sampling.

Place, publisher, year, edition, pages
2017. Vol. 17, article id 21
Keyword [en]
Biobanking, Disability, Ethics, General psychiatry, Voluntariness
National Category
Psychiatry
Identifiers
URN: urn:nbn:se:uu:diva-318531DOI: 10.1186/s12888-017-1199-0ISI: 000394384300003PubMedID: 28095825OAI: oai:DiVA.org:uu-318531DiVA, id: diva2:1084498
Funder
Swedish Society of Medicine
Note

Correction in BMC Psychiatry, Vol. 17 Article number 74. DOI: 10.1186/s12888-017-1228-z

Available from: 2017-03-25 Created: 2017-03-25 Last updated: 2017-11-29Bibliographically approved

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