Forum

Direct-to-consumer genetic testing: To test or not to test, that is the question

Collet Dandara, Jacqui Greenberg, Lindsay Lambie, Zane Lombard, Thirona Naicker, Raj Ramesar, Michele Ramsay, Lisa Roberts, Magda Theron, Phillip Venter, Soraya Bardien-Kruger

Abstract


In direct-to-consumer (DTC) genetic testing, laboratory-based genetic services are offered directly to the public without an independent healthcare professional being involved. The committee of the Southern African Society for Human Genetics (SASHG) appeals to the public and clinicians to be cautious when considering and interpreting such testing. It is important to stress that currently, the clinical validity and utility of genetic tests for complex multifactorial disorders such as type 2 diabetes mellitus and cardiovascular diseases is questionable. The majority of such tests are not scientifically validated and are based on a few preliminary studies. Potential consumers should be aware of the implications of genetic testing that could lead to stigmatisation and discrimination by insurance companies or potential employers of themselves and their family members. Guidelines and recommendations for DTC genetic testing in South Africa (SA) are currently lacking. We provide recommendations that seek to protect consumers and healthcare providers in SA from possible exploitation.


Authors' affiliations

Collet Dandara, Division of Human Genetics, University of Cape Town, South Africa

Jacqui Greenberg, Division of Human Genetics, University of Cape Town, South Africa

Lindsay Lambie, University of the Witwatersrand, Johannesburg, South Africa

Zane Lombard, University of the Witwatersrand, Johannesburg, South Africa

Thirona Naicker, University of KwaZulu-Natal, Durban, South Africa

Raj Ramesar, Division of Human Genetics, University of Cape Town, South Africa

Michele Ramsay, University of the Witwatersrand, Johannesburg, South Africa

Lisa Roberts, Division of Human Genetics, University of Cape Town, South Africa

Magda Theron, University of the Free State, Bloemfontein, South Africa

Phillip Venter, University of Limpopo, South Africa

Soraya Bardien-Kruger, University of Stellenbosch, Cape Town, South Africa

Full Text

PDF (152KB) HTML

Keywords

Direct-to-consumer genetic testing; SASHG; risks; limitations; regulation; recommendations

Cite this article

South African Medical Journal 2013;103(8):510-512. DOI:10.7196/SAMJ.7049

Article History

Date submitted: 2013-05-15
Date published: 2013-07-04

Article Views

Abstract views: 2911
Full text views: 4547

Comments on this article

*Read our policy for posting comments here