Antonel Olckers

If the law has made you a witness, remain a man [practitioner1] of science. You have no victim to avenge, no guilty or innocent person to convict or save—you must bear testimony within the limits o...

Realisation of the value and the commercialisation potential of data is gaining exponential momentum. The combination of historical data exploitations and the use of technologies that allow for the triangulation of data results in the collection, storage, and processing of massive amounts of data require diligent data management, including adherence to privacy and other laws, both nationally and internationally. The intrinsic value of scientific data, especially in genomics, becomes apparent when data are shared, often in collaboration with international partners, and compiled into big data sets that are subsequently used for benefit, including commercial benefit. The purpose of this article is to explore the commercialisation of data in South Africa against the backdrop of the legal framework governing the protection of personal information, confidentiality and privacy, with a specific focus on genetic and genomic information. Related issues, such as the collection and sharing of data, ownership of data and challenges about informed consent are also considered. After a brief evaluation of the African regulatory landscape relating to the protection of personal information, the article concludes with a few recommendations aimed at improving the status quo and sensitising the South African public as to the value of their data and personal information, as well as the potential uses and abuses to which their personal information may be subjected

Jerome Amir Singh's affiliation was erroneously given as: Centre for Medical Ethics and Law, Stellenbosch University, Stellenbosch, South Africa. Thecorrect affiliation is: School of Law, Howard College, University of KwaZulu-Natal, Durban, South Africa. The error appears in the Discussion Document by Adams et al. [https://doi.org/10.17159/sajs.2021/10933] on Page 1 under Affiliations (no. 22) and on Page 11 in the table under Authors' information, as well as in the accompanying Commentary by Adams et al. [https://doi.org/10.17159/sajs.2021/10935] in Table 1 on Page 3.

The POPIA Code of Conduct for Research, as it is currently being considered, pertains to research conducted in South Africa, which, as part of the research process, uses personal information as defined under POPIA. This Discussion Document outlines the main areas relating to the processing of personal information for research purposes which the proposed Code will address, including what consent models would be permissible under POPIA; the issues in relation to genetic research and the processing of personal information contained in inherited characteristics; the use of information matching programmes by researchers; and the use of personal information obtained from social media platforms for research. With ongoing and wide consultation with the scientific community in South Africa and all relevant stakeholders, it is hoped that the Code will provide guidance in supporting the lawful and responsible use of personal information while conducting scientific research in South Africa. The purpose and scope of the Code of Conduct for Research are set out in the accompanying Commentary available at https://doi.org/10.17159/sajs.2021/10935

The practice of forensic science has changed irrevocably in South Africa in 2017 with the request by the media to live-stream the State vs van Breda court case. The entire trial was broadcast and continues to be accessible on YouTube. Legal professionals are not formally trained with respect to DNA-specific testimony or DNA evidence. Although DNA experts are familiar with presenting DNA evidence to the legal profession and to Court in order to serve justice, the addition of live streaming by the media in the Court environment is a recent development. It is evident that the goals of practitioners of science, law and media are different in a court case. It would be ideal to have informed journalists reporting on the scientific and legal aspects of a case. In the absence of this, the public primarily receives information that is presented for other purposes, rather than for its accuracy. It is thus crucial that forensic scientists in South Africa, and elsewhere, engage in public forums as well as with the media in order to achieve appropriate dissemination of scientific evidence delivered in Court. A concerted effort is required by forensic experts to adapt to this new reality in South Africa.

In South Africa, forensic scientists have joined forces to form a professional body that represents the forensic science sector. The negative impact of an unaccredited national deoxyribonucleic acid (DNA) laboratory and unregulated forensic science profession will take a significant effort to undo and will not be accomplished without interventions at various levels. In this regard, science has not served justice. At present, despite the national DNA laboratory testifying (since 2001) that accreditation is under way, to our knowledge the only independent audit of data generated by this national laboratory has been when independent experts were contracted to perform technical audits on a case-by-case basis. This situation is untenable in the pursuit of justice at the national level. A lack of accountability, both at the professional and institutional levels, in any sector, breeds complacency and eventually has detrimental effects on the delivery of justice to citizens. Despite the late hour, concerted actions can turn the tide and allow science to serve justice.