Participant understanding of informed consent in a multidisease community-based health screening and biobank platform in rural South Africa
Year: 2020
Type: article
Abstract: BACKGROUND: In low- and middle-income settings, obtaining informed consent for biobanking may be complicated by socio-economic vulnerability and context-specific power dynamics. We explored participants experiences and perceptions of the research objectives in a community-based multidisease screening and biospecimen collection platform in rural KwaZulu-Natal, South Africa. METHODS: We undertook semi-structured in-depth interviews to assess participant understanding of the informed consent, research objectives and motivation for participation. RESULTS: Thirty-nine people participated (individuals who participated in screening/biospecimen collection and those who did not and members of the research team). Some participants said they understood the information shared with them. Some said they participated due to the perceived benefits of the reimbursement and convenience of free healthcare. Most who did not participate said it was due to logistical rather than ethical concerns. None of the participants recalled aspects of biobanking and genetics from the consent process. CONCLUSIONS: Although most people understood the study objectives, we observed challenges to identifying language appropriate to explain biobanking and genetic testing to our target population. Engagement with communities to adopt contextually relevant terminologies that participants can understand is crucial. Researchers need to be mindful of the impact of communities' socio-economic status and how compensation can be potentially coercive.
Source: International Health
Authors: Nothando Ngwenya, Manono Luthuli, Resign Gunda, Ntombizonke A Gumede, Oluwafemi Adeagbo, Busisiwe Nkosi, Dickman Gareta, Olivier Koole, Mark Siedner, Emily B Wong, Janet Seeley, on behalf of the Vukuzazi team, Ashmika Surujdeen, Hlolisile Khumalo, Ngcebo Mhlongo, Sanah Bucibo, Sibahle Gumbi, Lindani Mthembu, Seneme Mchunu, Mkhwanazi Phakamani, Mkhwanazi Anele, Mkhwanazi Ntombiyenhlanhla, Myeni Rose, Zikhali Mandlakayise, Mfeka Fezeka, Gumede Hlobisile, Mbonambi Nozipho, Ngubane Hloniphile, Simelane Thokozani, Ndlovu Bongumenzi, Ntimbane Talente, Mbuyisa Mbali, Mkhize Xolani, Sibiya Melusi, Ntombiyenkosi Ntombela, Mandisi Dlamini, Thengokwakhe Nkosi, Sibusiso Mkhwanazi, Mthombeni Skhumbuzo, Chonco Hlobisile, Dlamini Hlengiwe, Mlambo Doctar, Mzimela Nonhlanhla, Buthelezi Zinhle, Steto Mpumelelo, Mhlongo Sibusiso, Magwaza Bongani, Nsibande Siyabonga, Zondi Nombuyiselo, Buthelezi Khanyisani, Nsibande Sibusiso, Nonceba Mfeka, Ayanda Zungu, Hlobisile Gumede, Nonhlanhla Mfekayi, Smangaliso Zulu, Mzamo Buthelezi, Mkhwanazi Senzeni, Mlungisi Dube, Welcome Petros Mthembu, Sphiwe Clement Mthembu, Zinhle Mthembu, Bhengu Thokozani, Sandile Mthembu, Phumelele Mthethwa, Zamashandu Mbatha, Ashmika Surujdeen, Hlolisile Khumalo, Ngcebo Mhlongo, Sanah Bucibo, Sibahle Gumbi, Lindani Mthembu, Seneme Mchunu, Mkhwanazi Phakamani, Mkhwanazi Anele, Mkhwanazi Ntombiyenhlanhla, Myeni Rose, Zikhali Mandlakayise, Mfeka Fezeka, Gumede Hlobisile, Mbonambi Nozipho, Ngubane Hloniphile, Simelane Thokozani, Ndlovu Bongumenzi, Ntimbane Talente, Mbuyisa Mbali, Mkhize Xolani, Sibiya Melusi, Ntombiyenkosi Ntombela, Mandisi Dlamini, Thengokwakhe Nkosi, Sibusiso Mkhwanazi, Mthombeni Skhumbuzo, Chonco Hlobisile, Dlamini Hlengiwe, Mlambo Doctar, Mzimela Nonhlanhla, Buthelezi Zinhle, Steto Mpumelelo, Mhlongo Sibusiso, Magwaza Bongani, Nsibande Siyabonga, Zondi Nombuyiselo, Buthelezi Khanyisani, Nsibande Sibusiso, Nonceba Mfeka, Ayanda Zungu, Hlobisile Gumede, Nonhlanhla Mfekayi, Smangaliso Zulu, Mzamo Buthelezi, Mkhwanazi Senzeni, Mlungisi Dube, Welcome Petros Mthembu, Sphiwe Clement Mthembu, Zinhle Mthembu, Bhengu Thokozani, Sandile Mthembu, Phumelele Mthethwa, Zamashandu Mbatha
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $2,908
Awards: 'The Global Health Bioethics Network: a programme to carry out ethics research and build ethics capacity across the Wellcome Trust's Major Overseas Programmes.', Africa Centre for Health and Population Studies: Core Support, Evaluating UTT with a National HIV Cohort to Optimize South Africa's HIV Response (ENCORE), G666894910, Studies of Mucosal Associated Invariant T (MAIT) cells in people with HIV, TB and HIV/TB co-infection in South Africa
OpenAlex ID: W3102466577