Science body pushes for better human genetics ethics guidelines

The report advises that South Africa establish guidelines that address the ethical, legal and social implications of genetic work. (Graphic: John McCann/M&G)

The report advises that South Africa establish guidelines that address the ethical, legal and social implications of genetic work. (Graphic: John McCann/M&G)

The Academy of Science of South Africa (ASSAf) has released a study it says is aimed at creating a more certain regulatory environment for government departments on matters relating to human genetics and the human genome.

The authors of the study, titled Human Genetics and Genomics in South Africa: Ethical, Legal and Social Implications, also hope that it will direct specific research into human genetics.

“On the one hand the field [of genetics] is grossly under-regulated. On the other, we have a unique combination of genetic diversity and high disease burden which makes South Africa a key site globally to do biomedical research,” research panel chair Professor Michael Pepper from the University of Pretoria told News24.

The report is broadly focused on the areas of building relationships, respect and stewardship in terms of research into genetics.

“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,” said the ASSAf of the report.

The report advises that South Africa establish guidelines that address the ethical, legal and social implications of genetic work.

Closer ties between stakeholders recommended

In this area, the study specifically recommends regulation of the new field of consumer genetic marketing and testing.

These guidelines must be feasible, enforceable and sustainable, says the report.

“Breakthroughs are happening all the time, and we need to be ready to absorb the latest developments where they can be of benefit to our patients,” said Pepper.

“The framework we propose will increase the probability of this happening by providing comfort both to researchers/practitioners and patients.”

In terms of building relationships, the report recommends that closer ties are established between researchers, the public, academic institutions and the forensic science sectors.

Forensic science was critical in convicting axe murderer Henri van Breda who killed his father, mother and brother in their upmarket Stellenbosch estate home.

SA researchers ‘have set the bar high’

Experts for both the State and defence argued over the validity of the DNA evidence in the Western Cape High Court.

In the case of the murder of Courtney Pieters, forensic evidence was used to establish the extent of the sexual assault on the toddler.

Meanwhile, the World Health Organisation expressed its dismay over unintended consequences after Chinese scientist He Jiankui announced that he had edited the genes of twin girls.

Genetics experts in South Africa are cognisant of how their work should be informed by ethics, Pepper asserted.

“South African researchers, guided in part by the country’s research ethics committees, have set the bar high when it comes to ethics attitudes, and this is in part related to our history of discrimination as well as the recognition that we have a very valuable resource that needs to be protected.”

To ensure that this standard is upheld, the report calls for the establishment of a South African human genetics advisory board which will enforce a code of conduct for professionals in the field.

ASSAf president Professor Jonathan Jansen acknowledged funding for the study from the Department of Science and Technology. — News24

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