F E AT URE E T HI C S


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OST legislation views the collection of human tissue and personal data as quite separate and distinct. In the UK, we have different laws that


govern these in the form of the Human Tissue Act 2004 (Human Tissue (Scotland) Act 2006) and the Data Protection Act 1998 (DPA), respectively. But, given that human


tissue is a source of medical and genetic information, might we be creating a distinction that is not only unclear but also unhelpful in practice? Within every nucleated human cell there are 23 pairs of DNA strands that if joined end to end would be approximately two metres long. Coiled around itself and then spooled, these molecules are packaged into chromosomes in a space a few millionths of a millimetre across. And what these ribbons of DNA contain is information – data just as personal as your national insurance number or the collective answers you may have given to a series of probing questions. Thus, human tissue, whether a biopsy sample of your breast or prostate or a blood spot or hair follicle, is a little memory stick packed full of around 700 MB of data written not in words or numbers but in the coded language of organic chemistry. Why then do we view human tissue as something


distinct from the personal data we collect in healthcare? Why do we need different legislation to govern its storage and use, and to protect against its abuse? What would happen if we viewed our blood samples as data collections, albeit written in a different format, but nonetheless readable and understood by appropriate means?


BODY SNATCHERS AND SPERM BANKS The legal status of human tissue is at best uncertain. One professor of law recently noted that “the approach of the courts when considering proprietary... interests in human bodily material has been pragmatic and piecemeal”. Traditionally, most countries do not recognise any property value of the human body and, therefore, of human tissue. At common law, tissue is seen as a thing belonging to no one. What about body snatchers? – you may ask. Well, they were charged not with stealing the body (you cannot steal what is not owned) but with disturbing the grave and stealing the shroud. However, our concept of tissue has had to evolve in light of advances in technology. Our previous approach was based on the notion that tissue was merely stuff. Tissue can now no longer be seen as a simple aggregate of cells but rather as a collection of information. If tissue is information, how should we deal with it in the law and how as healthcare professionals and researchers should we be expected to handle, transfer and potentially profit from it? Much has been written about the ownership of tissue


in recent years. In the last decade several high-profile court cases around the world have addressed this issue and brought into question our traditional views of tissue. In the UK, the most prominent of these was Jonathan Yearworth and others v North Bristol NHS Trust (2009). Several men about to undergo chemotherapy had semen samples frozen by the hospital to allow them to father children should their treatment render them infertile.


12 / MDDUS INSIGHT / Q2 2017


Can our tissue be owned or traded? Allan Gaw considers an ethical and legal conundrum


IS HUMAN TISSUE DATA?


Unfortunately, these semen samples were destroyed due to laboratory equipment failure and the men sued for damages.


Initially these suits were unsuccessful as the Court did not view the semen as the men’s property, but the Court of Appeal of England and Wales subsequently ruled that the appellants had, “for the purposes of a claim in negligence... ownership of the sperm which they had ejaculated”. In 2010 and 2011, two courts in Australia took a similar approach when deciding the ownership of stored semen samples of deceased men.


OWNERSHIP OR CONTROL The Yearworth ruling was seen by many as a watershed, marking a new approach to the issue of human tissue ownership. Others, however, have argued that what was upheld by the Court of Appeal were not property rights, per se, but only limited rights of control. Ownership is not a necessary prerequisite of control.


There are things that no one owns (e.g. public domain data) and there are things that intrinsically cannot be owned (e.g. natural forces such as gravity or, traditionally, our bodies). But equally there are things which we control in whole or in part, that we do not own but in which we have interests. Thus, the real question may not be one of ownership but one of control, and as we have seen these are not


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