Translating the consent form is the tip of the iceberg: using cognitive interviews to assess the barriers to informed consent in South African health facilities

Author:

Pillay Nirvana1ORCID,Ncube Nobukhosi2,Moopelo Kearabetswe2,Mothoagae Gaolatlhe2,Welte Olivia3,Shogole Manape2,Gwiji Nasiphi3,Scott Lesley4,Moshani Noma5,Tiffin Nicki6,Boulle Andrew7,Griffiths Frances8,Fairlie Lee9,Mehta Ushma10,LeFevre Amnesty10,Scott Kerry11

Affiliation:

1. Senior Lecturer, Department of Sociology, University of the Witwatersrand, Johannesburg, South Africa; Director, Sarraounia Public Health Trust, 20 4th Avenue, Parktown North, Johannesburg, 2193, South Africa. Correspondence:

2. Social Scientist, Sarraounia Public Health Trust, Johannesburg, South Africa

3. Social Scientist, School of Public Health and Family Medicine, University of Cape Town, Cape Town, South Africa

4. School of Public Health, University of Cape Town, Cape Town, South Africa

5. Social Scientist, School of Public Health, University of Cape Town, Cape Town, South Africa

6. Professor, Life Sciences Building, South African Bioinformatics Institute, University of the Western Cape, Bellville, South Africa

7. Professor, School of Public Health, University of Cape Town, Cape Town, South Africa

8. Professor, Warwick Medical School, UK; Professor, Centre for Health Policy, School of Public Health, University of the Witwatersrand, Johannesburg, South Africa

9. Director of Maternal and Child Health, Wits RHI, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa

10. Associate Professor, School of Public Health, University of Cape Town, Cape Town, South Africa

11. Independent research consultant, Toronto, Canada; Associate Faculty, Johns Hopkins School of Public Health, Baltimore, MD, USA

Funder

President’s Emergency Plan for AIDS Relief

Centers for Disease Control and Prevention

Bill and Melinda Gates Foundation

UK Research and Innovation

Publisher

Informa UK Limited

Subject

Obstetrics and Gynecology,Reproductive Medicine

Reference28 articles.

1. Informed Consent in Biomedical Research

2. The quality of informed consent: mapping the landscape. A review of empirical data from developing and developed countries

3. Big data: destroyer of informed consent;Froomkin AM.;Yale J Law Technol,2019

4. Informed Consent, Big Data, and the Oxymoron of Research That Is Not Research

5. National Health Act 2004. https://www.gov.za/sites/default/files/gcis_document/201409/a61-03.pdf 2004.

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