No regrets: Young adult patients in psychiatry report positive reactions to biobank participation. Issue 1 (December 2017)

• Record Type: Journal Article
• Authors: Cunningham, Janet; Zanzi, Manuel; Willebrand, Mimmie; Ekselius, Lisa; Ramklint, Mia
• Is Part Of: BMC psychiatry. Volume 17:Issue 1(2017)
• Page Start: 1
• Page End: 8
• Publication Date: 2017-12
• Subjects: Biobanking -- Disability -- Ethics -- General psychiatry -- Voluntariness; Psychiatry -- Periodicals; 616.89005
• DOI: 10.1186/s12888-017-1199-0
• Languages: English
• ISSNs: 1471-244X

Abstract

Abstract 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.