Predictors of consent to cell line creation and immortalisation in a South African schizophrenia genomics study

 

Show simple item record

dc.contributor.author Campbell, Megan M
dc.contributor.author de Vries, Jantina
dc.contributor.author Mqulwana, Sibonile G
dc.contributor.author Mndini, Michael M
dc.contributor.author Ntola, Odwa A
dc.contributor.author Jonker, Deborah
dc.contributor.author Malan, Megan
dc.contributor.author Pretorius, Adele
dc.contributor.author Zingela, Zukiswa
dc.contributor.author Van Wyk, Stephanus
dc.contributor.author Stein, Dan J
dc.contributor.author Susser, Ezra
dc.date.accessioned 2018-07-17T10:52:52Z
dc.date.available 2018-07-17T10:52:52Z
dc.date.issued 2018-07-11
dc.identifier.citation Campbell, M. M., de Vries, J., Mqulwana, S. G., Mndini, M. M., Ntola, O. A., Jonker, D., ... & Stein, D. J. (2018). Predictors of consent to cell line creation and immortalisation in a South African schizophrenia genomics study. BMC medical ethics, 19(1), 72.
dc.identifier.uri https://doi.org/10.1186/s12910-018-0313-2
dc.identifier.uri http://hdl.handle.net/11427/28306
dc.description.abstract Background Cell line immortalisation is a growing component of African genomics research and biobanking. However, little is known about the factors influencing consent to cell line creation and immortalisation in African research settings. We contribute to addressing this gap by exploring three questions in a sample of Xhosa participants recruited for a South African psychiatric genomics study: First, what proportion of participants consented to cell line storage? Second, what were predictors of this consent? Third, what questions were raised by participants during this consent process? Methods 760 Xhose people with schizophrenia and 760 controls were matched to sex, age, level of education and recruitment region. We used descriptive statistics to determine the proportion of participants who consented to cell line creation and immortalization. Logistic regression methods were used to examine the predictors of consent. Reflections from study recruiters were elicited and discussed to identify key questions raised by participants about consent. Results Approximately 40% of participants consented to cell line storage. The recruiter who sought consent was a strong predictor of participant’s consent. Participants recruited from the South African Eastern Cape (as opposed to the Western Cape), and older participants (aged between 40 and 59 years), were more likely to consent; both these groups were more likely to hold traditional Xhosa values. Neither illness (schizophrenia vs control) nor education (primary vs secondary school) were significant predictors of consent. Key questions raised by participants included two broad themes: clarification of what cell immortalisation means, and issues around individual and community benefit. Conclusions These findings provide guidance on the proportion of participants likely to consent to cell line immortalisation in genomics research in Africa, and reinforce the important and influential role that study recruiters play during seeking of this consent. Our results reinforce the cultural and contextual factors underpinning consent choices, particularly around sharing and reciprocity. Finally, these results provide support for the growing literature challenging the stigmatizing perception that people with severe mental illness are overly vulnerable as a target group for heath research and specifically genomics studies.
dc.language.iso en
dc.publisher BioMed Central
dc.source BMC Medical Ethics
dc.source.uri https://bmcmedethics.biomedcentral.com/
dc.subject.other Neuropsychiatric genomics
dc.subject.other Xhosa
dc.subject.other Consent
dc.subject.other Cell immortalisation
dc.subject.other Predictors
dc.title Predictors of consent to cell line creation and immortalisation in a South African schizophrenia genomics study
dc.type Journal Article
dc.date.updated 2018-07-15T03:27:18Z
dc.rights.holder The Author(s).
dc.publisher.institution University of Cape Town
dc.publisher.faculty Faculty of Health Sciences en_ZA
dc.publisher.department Department of Psychiatry and Mental Health en_ZA
uct.type.filetype Text
uct.type.filetype Image
dc.identifier.apacitation Campbell, M. M., de Vries, J., Mqulwana, S. G., Mndini, M. M., Ntola, O. A., Jonker, D., ... Susser, E. (2018). Predictors of consent to cell line creation and immortalisation in a South African schizophrenia genomics study. <i>BMC Medical Ethics</i>, http://hdl.handle.net/11427/28306 en_ZA
dc.identifier.chicagocitation Campbell, Megan M, Jantina de Vries, Sibonile G Mqulwana, Michael M Mndini, Odwa A Ntola, Deborah Jonker, Megan Malan, et al "Predictors of consent to cell line creation and immortalisation in a South African schizophrenia genomics study." <i>BMC Medical Ethics</i> (2018) http://hdl.handle.net/11427/28306 en_ZA
dc.identifier.vancouvercitation Campbell MM, de Vries J, Mqulwana SG, Mndini MM, Ntola OA, Jonker D, et al. Predictors of consent to cell line creation and immortalisation in a South African schizophrenia genomics study. BMC Medical Ethics. 2018; http://hdl.handle.net/11427/28306. en_ZA
dc.identifier.ris TY - Journal Article AU - Campbell, Megan M AU - de Vries, Jantina AU - Mqulwana, Sibonile G AU - Mndini, Michael M AU - Ntola, Odwa A AU - Jonker, Deborah AU - Malan, Megan AU - Pretorius, Adele AU - Zingela, Zukiswa AU - Van Wyk, Stephanus AU - Stein, Dan J AU - Susser, Ezra AB - Background Cell line immortalisation is a growing component of African genomics research and biobanking. However, little is known about the factors influencing consent to cell line creation and immortalisation in African research settings. We contribute to addressing this gap by exploring three questions in a sample of Xhosa participants recruited for a South African psychiatric genomics study: First, what proportion of participants consented to cell line storage? Second, what were predictors of this consent? Third, what questions were raised by participants during this consent process? Methods 760 Xhose people with schizophrenia and 760 controls were matched to sex, age, level of education and recruitment region. We used descriptive statistics to determine the proportion of participants who consented to cell line creation and immortalization. Logistic regression methods were used to examine the predictors of consent. Reflections from study recruiters were elicited and discussed to identify key questions raised by participants about consent. Results Approximately 40% of participants consented to cell line storage. The recruiter who sought consent was a strong predictor of participant’s consent. Participants recruited from the South African Eastern Cape (as opposed to the Western Cape), and older participants (aged between 40 and 59 years), were more likely to consent; both these groups were more likely to hold traditional Xhosa values. Neither illness (schizophrenia vs control) nor education (primary vs secondary school) were significant predictors of consent. Key questions raised by participants included two broad themes: clarification of what cell immortalisation means, and issues around individual and community benefit. Conclusions These findings provide guidance on the proportion of participants likely to consent to cell line immortalisation in genomics research in Africa, and reinforce the important and influential role that study recruiters play during seeking of this consent. Our results reinforce the cultural and contextual factors underpinning consent choices, particularly around sharing and reciprocity. Finally, these results provide support for the growing literature challenging the stigmatizing perception that people with severe mental illness are overly vulnerable as a target group for heath research and specifically genomics studies. DA - 2018-07-11 DB - OpenUCT DP - University of Cape Town J1 - BMC Medical Ethics LK - https://open.uct.ac.za PB - University of Cape Town PY - 2018 T1 - Predictors of consent to cell line creation and immortalisation in a South African schizophrenia genomics study TI - Predictors of consent to cell line creation and immortalisation in a South African schizophrenia genomics study UR - http://hdl.handle.net/11427/28306 ER - en_ZA


Files in this item

This item appears in the following Collection(s)

Show simple item record