Swedish large-scale schizophrenia study: Why do patients and healthy controls participate?

SCHIZOPHRENIA RESEARCH

卷:228

Article

Dufva, Ylva Eriksson¹  Westman, Henrietta¹  Khilbom, Ulrik²  Sullivan, Patrick F.^3,4,5  Johansson, Viktoria^3,6,7 

[1] Karolinska Inst, Dept Clin Neurosci, Div Psychol, Stockholm, Sweden

[2] Uppsala Univ, Ctr Res Eth & Bioeth CRB, Uppsala, Sweden

[3] Karolinska Inst, Dept Med Epidemiol & Biostat, POB 281, SE-17177 Stockholm, Sweden

[4] Univ N Carolina, Dept Genet, Chapel Hill, NC 27515 USA

[5] Univ N Carolina, Dept Psychiat, Chapel Hill, NC 27515 USA

[6] Karolinska Inst, Dept Clin Neurosci, Ctr Psychiat Res, Stockholm, Sweden

[7] Stockholm Cty Council, Stockholm Hlth Care Serv, Stockholm, Sweden

关键词: Schizophrenia;    Genetic research;    Ethics;    Altruism;    Study participation;    Vulnerable populations;   

DOI  :  10.1016/j.schres.2021.01.007

来源: Elsevier

【 摘 要 】

Insights into determination of study participation are useful for researchers, clinicians and for ethical considerations. Fewlarge-scale genomic studies have involved motives for enrollment, in schizophrenia patients and unaffected controls. In a case-control study with participants recruited nation-wide in Sweden between 2005 and 2010, semi-structured interviews on motives and attitudes towards future studies were explored in 2767 schizophrenia cases and 4466 controls. In qualitative and quantitative analyses, we identified altruismas amajor determinant in 84% of the cases and in 97% of the controls. Among pre-defined subcategories of altruism, cases with schizophrenia were more often referring to science for example, 'I want to help science move forward' or 'I want better medications for future generations' in relation to unaffected controls that were more often referring to common humanity such as 'It is my duty and responsibility to help'. In schizophrenia, motives related to personal benefit and social influence were reported by 9% and 5%. We conclude that individuals with schizophrenia frequently report altruistic motives for study participation, almost to the same extent as unaffected controls. In contrast to unfortunate stereotypes, people with schizophrenia wish others to benefit from their experiences with severe mental illness and should not be refrained from participating in genomic research. (C) 2021 The Authors. Published by Elsevier B.V.Y

【 授权许可】

Free