Researchers are at loggerheads with the National Health Laboratory Services for the latter’s interpretation of the Protection of Personal Information Act (Popia) and refusal to share certain information.
According to Rapport, research into two rare auto-immune disorders is at a standstill as the NHLS refused to provide information to the researcher despite ethical and legal clearance from the researcher’s university.
The researcher said one of the diseases is so new that no ICD10 diagnostic code has been assigned so it is therefore impossible to do anonymous data mining based on ICD10 searches.
The NHLS denied having a blanket policy to refuse information on Popia grounds, but confirmed that it views their “‘overarching responsibility to ensure confidentiality and privacy of patient data as paramount”.
Wits University academic Victoria Bronstein disagrees with the NHLS interpretation, saying Popia is legislation of general application and the relevant health legislation regulating medical research should apply.
The controversial issue has been widely discussed in medical academic literature. The Academy of Science of SA submitted a draft Popia code of conduct to the Information Regulator in an attempt to avoid conflicts. The Information Regulator confirmed receipt of this, but said it was returned to the academy for “further development”.
Rapport article – Popi ry mediese navorsing in die wiele (Restricted access)
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