Articles

Constitutional, legal and regulatory imperatives for the renewed care and prevention of congenital disorders in South Africa

Helen Louise Malherbe, Arnold Lewis Christianson, C Aldous, Marylyn Christianson

Abstract


Medical genetic services for the care and prevention of congenital disorders have declined significantly in recent years due to competing health priorities, with previously developed services becoming compromised. With an infant mortality rate of 28/1 000 live births, South Africa (SA) has passed the threshold of 40/1 000 when such services should be implemented. This article outlines the international background and SA legislative framework for medical genetic services and their implementation. International, regional and national conventions, legislation, and policy were studied for relevance to genetic services and their implementation was evaluated, including a comparison of sector capacity between 2001 and 2015. A comprehensive legislative and regulatory framework exists in SA for the provision of medical genetic services, but implementation has been fragmented and unsustained. Congenital disorders and genetic services are not prominent in national strategies and excluded from interventions aimed at combating child mortality and non-communicable diseases. Capacity today is at a lower level than in 2001. The failure to recognise the burden of disease represented by congenital disorders is the underlying reason for the implementation and service shortfall. Child mortality rates have stagnated since 2011 and can be significantly further reduced by prioritising healthcare issues other than HIV/AIDS, including congenital disorders. It is now an imperative that SA responds to World Health Assembly Resolution 63.17 and prioritises congenital disorders as a healthcare issue, providing services to uphold the dignity and human rights of the most vulnerable members of society.


Authors' affiliations

Helen Louise Malherbe, School of Clinical Medicine, College of Health Sciences, University of KwaZulu-Natal, Durban, South Africa

Arnold Lewis Christianson, Wits Centre for Ethics (WiCE), University of the Witwatersrand, Johannesburg, South Africa

C Aldous, School of Clinical Medicine, College of Health Sciences, University of KwaZulu-Natal, Durban, South Africa

Marylyn Christianson, School of Law, University of the Witwatersrand, Johannesburg, South Africa

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Keywords

congenital disorders; medical genetic services; infant mortality; neonatal mortality, under-five mortality; disability; legislation; National Health Act;

Cite this article

South African Journal of Bioethics and Law 2016;9(1):11. DOI:10.7196/SAJBL.2016.v9i1.429

Article History

Date submitted: 2015-09-30
Date published: 2016-05-25

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