Timothy Caulfield holds the Canada Research Chair in Health Law and Policy at the University of Alberta.
Who owns your tissue? Do you have a right to control what happens to your cells and all the information packed into your DNA?
Given the decades of tissue-based research and the billions of dollars invested in tissue banks and genetic research you would think we would have clear answers to these basic questions. But, in fact, the law has remained – at least until earlier this month – surprisingly foggy.
A court decision from Ontario brought some unexpected and (I will argue) less-than-ideal clarity to this situation. The court was asked to make a determination if, for the purposes of a procedural matter in a lawsuit involving a physician, human tissue provided by a patient is property and, if so, who owned it.
The conclusion? Yep, human tissue is a form of personal property. Not only that, once it is removed from a patient, it is owned by the hospital.
Now, we need to be careful not to overinterpret the case. It was focused on a relatively narrow procedural matter and does not have much precedential weight. Still, this is the first Canadian legal decision on point. It will be influential, if only in a symbolic sense. And it seems to say that, in Canada, once tissue is removed from your body you lose control over it.
So why is this a big deal?
Biomedical research is advancing at a remarkable pace. Thanks to areas such as genomics and stem-cell research, human tissue and cells have never been more valuable, both economically and clinically. Not only are they essential research tools, it is hoped that, one day, they will form the basis of a range of regenerative therapies.
At the same time, as the result of fast and relatively inexpensive sequencing technologies, it is now possible to extract a massive amount of genetic information from almost any bit of tissue. There are, to cite just one extreme example, plans to sequence the genome of King Richard III, a guy who has been in the ground since 1485. If successful, this endeavour will reveal all of the dead monarch’s genetic traits and predispositions – from his hair and eye colour to his susceptibility to Alzheimer’s disease and various forms of cancer.
Given the state of modern biomedicine, human cells are no longer just anonymous globs of biomaterial. We should now think of every cell as a repository of a whole bunch of highly personal health information. Indeed, this is one reason tissue is such a valuable research resource. They are tiny filing cabinets filled with our genetic story.
Traditionally, Canadian law has held that patients retain an ongoing interest in personal health information, no matter where it resides. We have long had a right to control what is done with information that comes from our bodies because, to quote a famous Supreme Court of Canada decision on point, “[i]t is information that goes to the personal integrity and autonomy” of the individual.
But if human tissue is now a form of personal property that is owned by the institution that possesses it, will Canadians lose that control? If you donate cells or genetic material for research purposes, to what degree can you govern how it is used? Can institutions buy and sell the human tissue that they “own”?
Finding an answer to these questions will not be easy. Our research at the Health Law Institute has found a ridiculous lack of agreement on the key issues. A 2012 survey of more than 1,000 Albertans, for example, found that 26 per cent of respondents thought the individual retained ownership of human tissue donated for research purposes, 23 per cent thought the researcher did and 44 per cent the research institution. We also asked provincial privacy commissioners and legal and bioethics experts. The majority of respondents from these three communities thought the individual, the source of the tissue, continued to own and control the donated tissue samples. However, 77 per cent of scientists believed ownership rested with the research institution.
But despite this profound divergence in opinion, Canada needs to work toward a clear and sustainable policy. A good place to start is by recognizing that human tissue is, in a fundamental sense, personal health information that can be forever linked to the individual who provided it. By doing so, we gain an appreciation of why respecting the interests of the source of the tissue is so important, particularly in an era where there is growing concern about the protection of privacy.
Future advances in biomedicine require ongoing and healthy partnerships between the public and researchers that are built on trust and consent. Adopting the language of property law pushes us in the exact wrong direction.
Timothy Caulfield is the author of The Cure for Everything: Untangling the Twisted Messages about Health, Fitness and Happiness.