15 Morningside Road, Edinburgh EH10 4DP, Tel: 0131 447 6394 or 0774 298 4459
17 October 2005
1. The Scottish Parliament should ensure that the Human Tissue (Scotland) Bill complies with the following Council of Europe instruments:
2. The SCHB example of the electoral system which was characterised by Janis Hughes MSP as a “sad analogy” at the hearing of the Health Committee on Tuesday the 13th of September 2005 was not intended, in any way, to trivialise the matter. On the contrary, it is because issues relating to transplantation are so much more sensitive than those relating to voting, for many individuals in Scotland, that careful legal provisions need to be drafted.
4. With respect to Spain, though the general public is probably more aware of the presumed consent system than in France, it would be interesting to know what percentage of the population is really aware of the legislation. Accordingly, if relatives authorise the removal of organs from a deceased person who has not communicated his or her wishes and this person did not know about the system in place in Spain, then there is scope for other relatives or even human rights organisations to bring a case against the Spanish government to the European Court of Human Rights.
5. The Scottish Council on Human Bioethics (SCHB) would like to emphasise that new legislation should make sure that ethical principles have priority over medical interests. For example, some of the experiments undertaken on the remains of children at Alder Hey Children’s Hospital could potentially have resulted in treatments that could have saved lives but their procurement was accepted as being unethical. The priority given to ethical principles over medical interests is reflected in Article 2 (Primacy of the Human Being) of the Council of Europe Convention on Human Rights and Biomedicine (ETS – No.164) which states that:
The interests and welfare of the human being shall prevail over the sole interest of society or science.
This principle is also what led to the Nuremberg Code (in the case of biomedical research) to indicate in paragraph 1 that:
The voluntary consent of the human subject is absolutely essential.
6. The SCHB remains very concerned about the present drafting of Section 7 in the Human Tissue (Scotland) Bill. It is convinced that it would undermine confidence in the transplantation system. The SCHB is indeed aware of a number of single persons who are already considering taking their names off the NHS Organ Donor Register and obtaining legal advice if the provisions proposed in Section 7 are not amended by the Scottish Parliament. This is because they do not have any appropriate close relatives, as characterised in Section 45 of the Bill, on which they can really rely.
1 http://www.coe.int/T/E/Social_Cohesion/Health/Recommendations/Rec%282004%2907.asp