Participant understanding of informed consent in a multidisease community-based health screening and biobank platform in rural South Africa
Authors: Ngwenya Nothando , Luthuli Manono , Gunda Resign , Gumede Ntombizonke A , Adeagbo Oluwafemi , Nkosi Busisiwe , Gareta Dickman , Koole Olivier , Siedner Mark , Wong Emily B , Seeley Janet ,   on behalf of the Vukuzazi team, Surujdeen Ashmika , Khumalo Hlolisile , Mhlongo Ngcebo , Bucibo Sanah , Gumbi Sibahle , Mthembu Lindani , Mchunu Seneme , Phakamani Mkhwanazi , Anele Mkhwanazi , Ntombiyenhlanhla Mkhwanazi , Rose Myeni , Mandlakayise Zikhali , Fezeka Mfeka , Hlobisile Gumede , Nozipho Mbonambi , Hloniphile Ngubane , Thokozani Simelane , Bongumenzi Ndlovu , Talente Ntimbane , Mbali Mbuyisa , Xolani Mkhize , Melusi Sibiya , Ntombela Ntombiyenkosi , Dlamini Mandisi , Nkosi Thengokwakhe , Mkhwanazi Sibusiso , Skhumbuzo Mthombeni , Hlobisile Chonco , Hlengiwe Dlamini , Doctar Mlambo , Nonhlanhla Mzimela , Zinhle Buthelezi , Mpumelelo Steto , Sibusiso Mhlongo , Bongani Magwaza , Siyabonga Nsibande , Nombuyiselo Zondi , Khanyisani Buthelezi , Sibusiso Nsibande , Mfeka Nonceba , Zungu Ayanda , Gumede Hlobisile , Mfekayi Nonhlanhla , Zulu Smangaliso , Buthelezi Mzamo , Senzeni Mkhwanazi , Dube Mlungisi , Mthembu Welcome Petros , Mthembu Sphiwe Clement , Mthembu Zinhle , Thokozani Bhengu , Mthembu Sandile , Mthethwa Phumelele , Mbatha Zamashandu , Surujdeen Ashmika , Khumalo Hlolisile , Mhlongo Ngcebo , Bucibo Sanah , Gumbi Sibahle , Mthembu Lindani , Mchunu Seneme , Phakamani Mkhwanazi , Anele Mkhwanazi , Ntombiyenhlanhla Mkhwanazi , Rose Myeni , Mandlakayise Zikhali , Fezeka Mfeka , Hlobisile Gumede , Nozipho Mbonambi , Hloniphile Ngubane , Thokozani Simelane , Bongumenzi Ndlovu , Talente Ntimbane , Mbali Mbuyisa , Xolani Mkhize , Melusi Sibiya , Ntombela Ntombiyenkosi , Dlamini Mandisi , Nkosi Thengokwakhe , Mkhwanazi Sibusiso , Skhumbuzo Mthombeni , Hlobisile Chonco , Hlengiwe Dlamini , Doctar Mlambo , Nonhlanhla Mzimela , Zinhle Buthelezi , Mpumelelo Steto , Sibusiso Mhlongo , Bongani Magwaza , Siyabonga Nsibande , Nombuyiselo Zondi , Khanyisani Buthelezi , Sibusiso Nsibande , Mfeka Nonceba , Zungu Ayanda , Gumede Hlobisile , Mfekayi Nonhlanhla , Zulu Smangaliso , Buthelezi Mzamo , Senzeni Mkhwanazi , Dube Mlungisi , Mthembu Welcome Petros , Mthembu Sphiwe Clement , Mthembu Zinhle , Thokozani Bhengu , Mthembu Sandile , Mthethwa Phumelele , Mbatha Zamashandu 
Published: August 2020

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.