South Africa needs to develop policies, regulations and guidelines to address the ethical, legal and social implications (ELSI) of genetic and genomic work. These need to be ethically and legally sound, culturally appropriate, feasible, enforceable and sustainable.
This is found in a study report entitled Human Genetics and Genomics in South Africa: Ethical, Legal and Social Implications released by the Academy of Science of South Africa (ASSAf) on 4 December 2018.The face of health care delivery, biomedical research and forensics in South Africa is rapidly changing as a result of advances in the fields of genetics and genomics, with a corresponding need to consider the ELSI of these fields and the technological advances that occur therein.
This study addresses the ELSI of genetics and genomics work as it relates to research, health service provision Central to the report is the broad philosophical approach of Ubuntu, a philosophical notion that refers to the essence or quality of being human. The report 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 benefits are shared by all and that no harm is done.
The report is divided into three thematic areas: Building Relationships, Respect for Persons and Good Stewardship.
Building Relationships focuses on 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.
The topic of Respect for Persons is addressed in accordance with the South African Constitution, which recognises and protects both autonomy and self-determination.
In the section on Good 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. A recommendation in this regard calls for a code of conduct and best practice for professionals working in the field of genetics and genomics in South Africa to be developed and other appropriate entities to promote good stewardship of resources, including data and biological specimens.
Overarching recommendations of the report call for capacity development as appropriately trained and skilled personnel at all levels of genetics and genomics work is currently in short supply.
An inclusive and cross-cutting legal framework with policies, regulations and guidelines for genetics and genomics should be developed taking into account national, regional and international contexts, and should avoid stifling innovation.
An independent and adequately resourced South African Human Genetics Advisory Board should be established at national level to provide oversight.
With regard to oversight, it is recommended that ethical and legal implications should be brought to the attention of the relevant authorities, the National Health Research Ethics Council and South African Law Reform Commission respectively, whose involvement in policy-drafting should be sought.