Participant understanding of informed consent in a multidisease community-based health screening and biobank platform in rural South Africa
Nothando Ngwenya, Manono Luthuli, Resign Gunda, Ntombizonke A. Gumede, Oluwafemi Adeagbo, Busisiwe Nkosi, Dickman Gareta, Olivier Koole, Mark J. Siedner, Emily Wong, Janet Seeley, on behalf of the Vukuzazi team, Ashmika Surujdeen, Hlolisile Khumalo, Ngcebo Mhlongo, Sanah Bucibo, Sibahle Gumbi, Lindani Mthembu, Seneme Mchunu, Phakamani Mkhwanazi, Anele Mkhwanazi, Mkhwanazi Ntombiyenhlanhla, Rose Myeni, Zikhali Mandlakayise, Fezeka Mfeka, Hlobisile Gumede, Nozipho Mbonambi, Hloniphile Ngubane, Simelane Thokozani, Bongumenzi Ndlovu, Talente Ntimbane, Mbuyisa Mbali, Xolani Mkhize, Melusi Sibiya, Ntombiyenkosi Ntombela, Mandisi Dlamini, Thengokwakhe Nkosi, Sibusiso Mkhwanazi, Skhumbuzo Mthombeni, Chonco Hlobisile, Hlengiwe Dlamini, Mlambo Doctar, Mzimela Nonhlanhla, Zinhle Buthelezi, Mpumelelo Steto, Mhlongo Sibusiso, Magwaza Bongani, Siyabonga Nsibande, Zondi Nombuyiselo, Khanyisani Buthelezi, Nsibande Sibusiso, Nonceba Mfeka, Ayanda Zungu, Hlobisile Gumede, Nonhlanhla Mfekayi, Smangaliso Zulu, Mzamo Buthelezi, Senzeni Mkhwanazi, Mlungisi Dube, Welcome Petros Mthembu, Sphiwe Clement Mthembu, Zinhle Mthembu, Thokozani Bhengu, Sandile Mthembu, Phumelele Mthethwa, Zamashandu Mbatha, Ashmika Surujdeen, Hlolisile Khumalo, Ngcebo Mhlongo, Sanah Bucibo, Sibahle Gumbi, Lindani Mthembu, Seneme Mchunu, Phakamani Mkhwanazi, Anele Mkhwanazi, Mkhwanazi Ntombiyenhlanhla, Rose Myeni, Zikhali Mandlakayise, Fezeka Mfeka, Hlobisile Gumede, Nozipho Mbonambi, Hloniphile Ngubane, Simelane Thokozani, Bongumenzi Ndlovu, Talente Ntimbane, Mbuyisa Mbali, Xolani Mkhize, Melusi Sibiya, Ntombiyenkosi Ntombela, Mandisi Dlamini, Thengokwakhe Nkosi, Sibusiso Mkhwanazi, Skhumbuzo Mthombeni, Chonco Hlobisile, Hlengiwe Dlamini, Mlambo Doctar, Mzimela Nonhlanhla, Zinhle Buthelezi, Mpumelelo Steto, Mhlongo Sibusiso
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.