UP academic leads the call for stronger guidelines in human genetics work in SA

Posted on January 07, 2019

The Academy of Science of South Africa (ASSAf) has released a report that details the need for better regulatory practice in South Africa in the field of human genetics and genomics work. Entitled ‘Human Genetics and Genomics in South Africa: Ethical, Legal and Social Implications’, the document is the result of a study undertaken over the past two and a half years by a panel of 13 people that was chaired by Prof Michael Pepper, Director of the Institute for Cellular and Molecular Medicine and the SAMRC Extramural Unit for Stem Cell Research and Therapy at the University of Pretoria.

With the rapid advances in genetics and genomics technology, and the many benefits that come with it, South Africa needs to develop policies, regulations and guidelines to address the implications of genetics and genomics work – these need to be ethically and legally sound, culturally appropriate, feasible, enforceable and sustainable.

The ASSAf study addresses the ethical, legal and social implications as they relate to research, healthcare provision and forensic applications (medical and legal) in the country, and describes the benefits to be derived from genetic and genomics work, the need for boundaries to be clearly defined and adherence monitored to ensure that no harm is done and everyone shares the benefits. The idea of ubuntu (“I am because we are”), which refers to the essence or quality of being human, is central to the study.

The report broadly focuses on the areas of building relationships, respect for people and good stewardship. In terms building relationships, it looks at the engagement between human genetics and genomics practitioners, communities and the general public, and includes academic research, genetic testing in the public and private sectors as well as relationships between the public, the law and the forensic science sector. Respect is addressed in accordance with the South African Constitution, which recognises and protects both autonomy and self-determination. In the section on stewardship, the need for responsibility is highlighted in terms of sustainable and careful use of genomic resources by individuals, communities, organisations, companies and governmental institutions. In this regard, the study calls for the development of a code of conduct and best practice to promote good stewardship of resources, including data and biological specimens.

There is a strong call for capacity development, as appropriately trained and skilled personnel at all levels of genetics and genomics work is in short supply. An inclusive and crosscutting legal framework with policies, regulations and guidelines for genetics and genomics should also be developed taking into account national, regional and international contexts, and should avoid stifling innovation.

Finally, an independent and adequately resourced South African Human Genetics Advisory Board should be established at national level to provide oversight. The study recommends that ethical and legal implications be brought to the attention of the National Health Research Ethics Council and the South African Law Reform Commission respectively, and their involvement in policy drafting be sought.


- Author Department of University Relations

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