necessarily the same things. If human tissue is to be used for research, for example, it is hard to imagine that the individual from whom the tissue was taken could be directly harmed by its use. However, it is easy to imagine how such an individual could be adversely affected by the misuse of the data derived from his or her tissue. If we regard tissue as data in the first place, then the
full force of data protection legislation applies and the unwarranted use, storage, sharing and exploitation of the tissue would be prevented. The principles of data protection are designed in fact to protect people by placing significant responsibilities on those who collect and store data, while conferring rights on those who are the subjects of the data. If it is all about preventing unwanted information trafficking, then control of that information is of paramount importance and data protection principles are, in practice, more about control than ownership. However, it would also mean that tissue, when viewed as data, would become a commodity to be owned and traded, potentially for financial gain. Currently, tissue has value but no price; data has both. If tissue is data in a different format then it too is subject to a rethink. In some countries, such as Germany, they have formally ruled that tissue is not data, but in other countries they are not so sure and anyone working with human tissue samples should be aware of where these arguments are going and the impact future rulings might have on our practice.
HUMAN DIGNITY But our legal approaches to this question have often turned on another dimension of human tissue – that of dignity. This is a complex concept, but dignity is the principle that perhaps best encapsulates what is important and unique about human tissue. In order to preserve the dignity of the human body there are inevitably certain things which we may wish to do with tissue that courts may decide are inappropriate. It is not consistent with any meaningful concept of human dignity that the human body could be viewed as a commodity with a price, but information has always had a price and our data can be owned and therefore traded. It can also of course be stolen, but so can DNA. The Human Tissue Act created a new crime in the UK of DNA theft, whereby it is an offence to have “any bodily material intending that any human DNA in the material be analysed without qualifying consent”. If you can steal DNA, surely it must be owned by someone in the first place. Perhaps, the best way to ensure that we preserve this dignity is to view human tissue as equivalent to sensitive personal data, wrapped in the bundle of legal protection that this definition confers. Direct application of these data protection principles in the collection and storage of human tissue samples would thus ensure both the protection of unwanted information flow and might uphold the special status of human tissue.
Dr Allan Gaw is a writer and educator in Glasgow
SOURCES • Foster C. Journal of Medical Ethics 2013
• Skene L. Journal of Medical Ethics 2013
• Jonathan Yearworth and others v North Bristol NHS Trust (2009)
• Beasley v Wesley Monash IVF (2010)
• Macilotti M. Rev Der Gen H 2011
• Jocelyn Edwards, Re the Estate of the late Mark Edwards (2011)
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