The concept of who owns the cells in your body may seem like a no brainer, but actually the issue is more complex than many of us realise. In a recent parliamentary portfolio committee meeting, doctors representing the South African Medical Association (SAMA) said that it is unclear who holds the rights to human tissue used in research.
In March 2012, new regulations which govern the use of human tissue were gazetted. They cover the use of human blood, tissue and gametes, but SAMA legal adviser Julian Botha said they provided no guidance on who owns human tissue that was voluntarily provided for research purposes. There is also no indication on who has the rights to revenue generated from this material.
One of the most famous cases of human tissue being used in research without consent was that of Henrietta Lacks, a poor tobacco farmer in the US who died of cancer in 1951. Her cells were taken without her permission and have proved so important they have formed the foundation for work leading to two Nobel prizes. Her story was told in The Immortal Life of Henrietta Lacks by Rebecca Skroot. In spite of widespread coverage of her story, The Guardian reported in March that her genome had been published, again without the permission of her family.
So, our new act is a step in the right direction, but it provides no guidance for the future use of such material or provides regulations pertaining to the use of material for a different purpose to that for which it was donated.
I think this is a major error, and a loophole which I hope will be closed in the near future. Our genetic privacy and rights are as important as any of our other personal human rights.