South African law may impede human health research

22 February 2019  Vol 363, Issue 6429

South African law may impede human health research
By Linda Nordling
Science22 Feb 2019 : 802 Restricted Access
Data protection measure may block reuse of data in biobanks.
South Africa’s varied population makes it a magnet for research on public health and human diversity. But a new privacy law called The Protection of Personal Information Act, scheduled to go into effect in 2020, could upend such research. The law aims to protect South Africans from abuse of their personal data and says that such information, including genetic data, must be collected for a specific purpose—and that data subjects need to be “aware of the purpose.” But giant sample and data repositories called biobanks are transforming health research around the world by allowing multiple researchers to ask new questions of the same data. At a meeting in Cape Town on 4–5 February, lawyers, ethicists, and researchers discussed how the new South African rule could limit such secondary use of data and hamstring international collaborations.