Restricted Access to Registries

For the book Bloody Harvest, David Kilgour and David Matas were able to garner information about transplant volumes from the China Liver Transplant Registry in Hong Kong.¹ After publication of the book, the China Liver Transplant Registry shut down public access to statistical aggregate data on its site. Access is available only to those who have a registry-issued login name and password.

For a while thereafter, the names and locations of transplant hospitals reporting to the registry remained public. The registry listed 35 national hospitals (including 9 military) and 45 provincial hospitals (including 11 military). After David Matas referred to this data publicly it was also removed from public view.

At the Transplantation Congress in Vancouver in August 2010, Haibo Wang, Assistant Director of the China Liver Transplant Registry, presented at the same session as did David Matas. David Matas asked him why public access to the data on the registry website was shut down and if it could be restored. His answer was that public access was shut down because people were misinterpreting the data. If anyone was to get access from then on, the registry first had to know the purpose for which the data was to be used and have some confidence that the data would not be misinterpreted.

The Chinese health system runs four transplant registries, one each for liver, kidney, heart and lung transplants. The liver registry is located in Hong Kong.² The other three are in Mainland China with kidney³ and heart⁴ registries in Beijing and lung⁵ in Wuxi. The data on these other three sites are also accessible only to those who have registry-issued login names and passwords.

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