Learning resources
Chapter 9 - Organ transplantation and the use of human tissue
CASE STUDY
Facts
Joseph is a devout Christian and feels very strongly that making his organs available after his death is a 'gift of life' that he very much wants to give. He discusses his wishes with his relatives and also carries an organ donor card in his wallet at all times. Joseph has now been in a motorcycle accident and it has become apparent that the current run of diagnostics will result in a diagnosis of irreversible brain stem death. The hospital's transplantation coordinator approaches Joseph’s relatives, who have come to say their goodbyes. Joseph's daughter Jocelyn reacts angrily to the suggestion that Joseph wanted to be an organ donor. She had not had contact with Joseph for over ten years and he therefore had not discussed his wishes with her, but she is adamant that she wants her father to be buried 'intact'. Joseph's brother Godfrey suggests that he would be willing to give consent to the organ donation but would require assurances that any organs taken would only be allocated to "white people like Joseph". Marc and Simon are asked to advise on the legal and ethical issues.
Analysis
Marc advises that this is a case where what is legally permissible may be different from what it is suggested should be done. The Human Tissue Act 2004 (p. 213) provides that organs may be removed, stored and used for the purposes of transplantation if there is appropriate consent from the donor. In this case, Marc notes that this has clearly been given. However, the Code of Practice (p.216) that accompanies the Act recommends that where the relatives disagree and do not wish that the organs be removed, hospitals should give serious consideration to not removing them. Indeed, Marc is of the opinion that the tone of the Code of Practice would favour not taking the organs in general terms. He acknowledges that this is against the spirit of the Act, which seeks to prioritise patient autonomy, but also says that this is a consequence of the scandals that led to the implementation of the new legislation. Simon interjects to say that he finds it quite problematic to go against Joseph's express wishes here: there is no doubt about what Joseph would have wanted and it is difficult to see how not respecting these wishes is in some way respectful of his preferences and his enduring dignity.
A complicating factor is that the objections come from sources who are problematic. Jocelyn has been estranged from her father and therefore does not know what he wants, and the law is clear that directed donation to a specific ethnic group will not be accepted. Simon agrees that Jocelyn's ability to influence the decision should be limited, as she is clearly not deciding on the basis of what she feels her father would have wanted but on the basis of her own preferences. The fact that Godfrey can quite simply not determine who should get Joseph's organs is, from Simon's point of view, one that does not need to be discussed at length: it is simply unacceptable to make such stipulations, in particular where they are driven by a discriminatory mindset. Thus, Marc concludes that while it is possible to take the organs in legal terms, the Code of Practice should be taken into account despite the fact that the relatives’ reasons for refusing to support donation are unreasonable. Simon disagrees strongly and feels that in order to respect the deceased's choices appropriately, explantation should be the only option. Marc continues and states that the lack of reason in those objections mean that Marc is unclear as to what to suggest, and indeed how he thinks that a court would act. If pressed for an answer, he is of the opinion that a court would perhaps try to protect the spirit of the Act and thus do what Joseph would have wanted, and support the donation. Simon agrees and strongly advises the transplant team to give effect to the express wishes of the deceased patient. Marc suggests that had Jocelyn not been estranged from her father, the court may have had a more complicated decision to make. Simon agrees to the extent that it might have been the case that Jocelyn might then have had more recent or accurate knowledge of her father's wishes but not if she simply expressed her own desires in the teeth of Joseph's. Simon adds that of course the relatives' feelings and wishes should be taken into account and where the taking of organs would result in anguish to members of a close family, this should play a role. In this case, however, he does not feel that this would be relevant.
ONLINE RESOURCES
- A. Cambon-Thomsen, ‘The Emergence of Biobanks in the Legal Landscape: Towards a New Model of Governance’ (2012) 39(1) Journal of Law and Society 113 http://onlinelibrary.wiley.com/doi/10.1111/j.1467-6478.2012.00573.x/abstract
- T. Caulfield and J. Kaye, ‘Broad Consent in Biobanking: Reflections on Seemingly Insurmountable Dilemmas’ (2009) 10 Medical Law International 85 http://mli.sagepub.com/content/10/2/85.short?rss=1&ssource=mfc
- A. Cronin, M. Rose, J. Dark and J. Douglas, ‘British Transplant Research Endangered by Human Tissue Act’ (2011) 37 Journal of Medical Ethics 512 http://jme.bmj.com/content/37/8/512.full.pdf+html
- K. Liddell and A. Hall, ‘Beyond Bristol and Alder Hey: The Future Regulation of Human Tissue’ (2005) 13 Medical Law Review 170 http://medlaw.oxfordjournals.org/content/13/2/170.full.pdf
- D. Price, ‘From Cosmos and Damien to Van Velzen: The Human Tissue Saga Continues’ (2003) 11 Medical Law Review 1 http://medlaw.oxfordjournals.org/content/11/1/1.long
- D. Price, ‘The Human Tissue Act 2004’ (2005) 68(5) Modern Law Review 798 http://onlinelibrary.wiley.com/journal/10.1111/(ISSN)1468-2230/issues
- B. Björkman and S. Ove Hansson, ‘Bodily Rights and Property Rights’ (2006) 32 Journal of Medical Ethics 209–14 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2565785/pdf/209.pdf
- N. Hoppe, Bioequity – Property and the Human Body (Aldershot: Ashgate, 2009) http://books.google.de/books?id=ZK408ZyvLCEC
- C. Lenk, J. Sándor and B. Gordijn (eds.), Biobanks and Tissue Research (Dordrecht: Springer, 2011) http://books.google.de/books?id=q9IoPFsnKO4C
- J. Radcliffe Richards, The Ethics of Transplants – Why Careless Thought Costs Lives (Oxford University Press, 2012) http://books.google.de/books?id=SSuRAAAAQBAJ
- R. Veatch, Transplantation Ethics (Washington, DC: Georgetown University Press, 2000) http://books.google.de/books?id=aNcbKssW30IC