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Large international biobank studies can make substantial contributions to scientific research by validation of the biological importance of previous research and by identification of previously unknown causes of disease. However, regulations for patient consent that are too strict and discrepancies in national policies on informed consent might hinder(More)
This paper discusses the potential harms involved in biobank research and how ethical review, informed consent, withdrawals, and anonymization of samples should be handled in the light of these harms. There is less risk involved in biobank research than in human subject research; it should therefore be treated differently. In our view, anonymization should(More)
OBJECTIVE The objective of this study was to investigate the importance of trust in researchers and other reasons that participating parents, former participants, and non-participants had for participating, or not participating, in a longitudinal cohort study on prediction and development of diabetes in children. STUDY DESIGN A questionnaire addressing(More)
In the debate on biobank regulation, arguments often draw upon findings in surveys on public attitudes. However, surveys on willingness to participate in research may not always predict actual participation rates. We compared hypothetical willingness as estimated in 11 surveys conducted in Sweden, Iceland, United Kingdom, Ireland, United States and(More)
BACKGROUND Involuntary treatment is a key issue in healthcare ethics. In this study, ethical issues relating to involuntary psychiatric treatment are investigated through interviews with Swedish psychiatrists. METHODS In-depth interviews were conducted with eight Swedish psychiatrists, focusing on their experiences of and views on compulsory treatment. In(More)
PURPOSE This study aimed to review published quantitative studies for evidence regarding the influence of oral rehabilitation following total or partial tooth loss on self-perceived oral health-related quality of life (OHRQoL). MATERIALS AND METHODS Three databases were searched using specified indexing terms. The reference lists of relevant publications(More)
OBJECTIVES To estimate how many people object to storage of biological samples collected in health care in Sweden and to their use in research and how many withdraw previous consent. DESIGN Cross sectional study of register data. SETTING Biobanks used in Swedish health care, 2005-6. Population Data on refusal to consent were obtained for 1.4 million(More)
In a time when the challenge of people being over-researched and experiencing research fatigue is increasingly discussed, low participation rates and potential sample biases are a growing concern in genetic research. In a recent study assessing factors relevant to successful recruitment of patients with myocardial infarction to a genetic study, enrollment(More)