Editorial

Implications of direct-to-consumer whole-exome sequencing in South Africa

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Zané Lombard, Fiona Baine, Amanda Krause, Anneline Lochan, Shelley Macualay, Careni Spencer, Colleen Aldous, Jantina de Vries, Karen Fieggen, Bertram Henderson, Eileen Hoal, Craig Kinnear, Noelene Kinsley, Alison September, Michael Urban, Himla Soodyall, Michael Pepper, Michele Ramsay

Abstract


This editorial examines a number of vitally important ethical, legal and scientific concerns that have to be addressed to ensure proper and ethical implementation of direct-to-consumer whole-exome sequencing in South Africa. Individuals taking part in this endeavour must be fully informed of the positive and negative sequelae.


Authors' affiliations

Zané Lombard, Southern African Society for Human Genetics, Johannesburg, South Africa; Division of Human Genetics, School of Pathology, Faculty of Health Sciences, National Health Laboratory Service, University of the Witwatersrand, Johannesburg, South Africa

Fiona Baine, Southern African Society for Human Genetics, Johannesburg, South Africa; Division of Human Genetics, School of Pathology, Faculty of Health Sciences, National Health Laboratory Service, University of the Witwatersrand, Johannesburg, South Africa

Amanda Krause, Southern African Society for Human Genetics, Johannesburg, South Africa; Division of Human Genetics, School of Pathology, Faculty of Health Sciences, National Health Laboratory Service, University of the Witwatersrand, Johannesburg, South Africa

Anneline Lochan, Southern African Society for Human Genetics, Johannesburg, South Africa; Division of Human Genetics, School of Pathology, Faculty of Health Sciences, National Health Laboratory Service, University of the Witwatersrand, Johannesburg, South Africa

Shelley Macualay, Southern African Society for Human Genetics, Johannesburg, South Africa; Division of Human Genetics, School of Pathology, Faculty of Health Sciences, National Health Laboratory Service, University of the Witwatersrand, Johannesburg, South Africa

Careni Spencer, Southern African Society for Human Genetics, Johannesburg, South Africa; Division of Human Genetics, School of Pathology, Faculty of Health Sciences, National Health Laboratory Service, University of the Witwatersrand, Johannesburg, South Africa

Colleen Aldous, Southern African Society for Human Genetics, Johannesburg, South Africa; School of Clinical Medicine, Nelson Mandela School of Medicine, College of Health Sciences, University of KwaZulu-Natal, Durban, KwaZulu-Natal, South Africa

Jantina de Vries, Southern African Society for Human Genetics, Johannesburg, South Africa; Department of Medicine, Faculty of Health Sciences, University of Cape Town, South Africa

Karen Fieggen, Southern African Society for Human Genetics, Johannesburg, South Africa; Division of Human Genetics, Department of Clinical Laboratory Sciences, Faculty of Health Sciences, University of Cape Town, South Africa

Bertram Henderson, Southern African Society for Human Genetics, Johannesburg, South Africa; Division of Human Genetics, Faculty of Health Sciences, University of the Free State, Bloemfontein, South Africa

Eileen Hoal, Southern African Society for Human Genetics, Johannesburg, South Africa; DST/NRF Centre of Excellence for Biomedical Tuberculosis Research/MRC Centre for Molecular and Cellular Biology, Division of Molecular Biology and Human Genetics, Faculty of Medicine and Health Sciences, Stellenbosch University, Tygerberg, Cape Town, South Africa

Craig Kinnear, Southern African Society for Human Genetics, Johannesburg, South Africa; DST/NRF Centre of Excellence for Biomedical Tuberculosis Research/MRC Centre for Molecular and Cellular Biology, Division of Molecular Biology and Human Genetics, Faculty of Medicine and Health Sciences, Stellenbosch University, Tygerberg, Cape Town, South Africa

Noelene Kinsley, Southern African Society for Human Genetics, Johannesburg, South Africa; Genetic Counselling SA, South Africa

Alison September, Southern African Society for Human Genetics, Johannesburg, South Africa; Division of Exercise Science and Sports Medicine, Department of Human Biology, Faculty of Health Sciences, University of Cape Town, South Africa

Michael Urban, Southern African Society for Human Genetics, Johannesburg, South Africa; Division of Molecular Biology and Human Genetics, Faculty of Medicine and Health Sciences, Stellenbosch University, Tygerberg, Cape Town, South Africa

Himla Soodyall, Genetic Alliance South Africa, Johannesburg, South Africa; Division of Human Genetics, School of Pathology, Faculty of Health Sciences, National Health Laboratory Service, University of the Witwatersrand, Johannesburg, South Africa

Michael Pepper, Southern African Human Genome Programme, Pretoria, South Africa; Institute for Cellular and Molecular Medicine, Department of Immunology, Faculty of Health Sciences, University of Pretoria, South Africa

Michele Ramsay, Southern African Human Genome Programme, Pretoria, South Africa; Sydney Brenner Institute for Molecular Bioscience, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa

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Keywords

Direct-to-consumer; Whole-exome sequencing; Ethical concerns; South Africa; Discovery Health;

Cite this article

South African Medical Journal 2016;106(2):139-140. DOI:10.7196/SAMJ.2016.v106i2.10534

Article History

Date submitted: 2016-01-12
Date published: 2016-01-12

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