Go Back
SPEECH BY THE HON. DR. LOUIS DEGUARA, MINISTER OF HEALTH AT THE BIOETHICS CONFERENCE 2001, UNIVERSITY OF MALTA - 26/27th October 2001
pr1583
29/10/2001
29/10/2001
| The Bioethics Conference has now become an annual | event. It gives us an opportunity to reflect on issues relating to heath which are at the very root of medical practice. |
| This year, this Conference has dealt with two very | important issues, relating to the beginning and end of life. There is no need to emphasise the importance or the topicality of these issues. |
| Genetic testing has been with us for decades, but it | is only in recent years that advances in molecular biology has made it possible to tease out the fine details of the human genome and relate these changes to disease processes and even to character traits. Our genome is a very personal bequest and needs to be guarded very carefully. |
| It is for this reason that genetic testing is not at | all like any other diagnostic test in that the results obtained may affect not only the individuals who submit themselves for the test, but also the whole family and even more remote relatives of those persons. The question of informed consent, important in all medical issues, is particularly essential in the case of testing for genetic disorders. A case could be made that no genetic test should be performed unless the whole family has received adequate counselling about the possible consequences of a diagnosis. |
| Performing a genetic test is not like testing oneself | for cholesterol or anaemia. We have to be very clear in our minds why we are performing genetic tests, because the results of these tests will remain attached to us for the rest of our lives. It is also quite likely that further research might show relationships not only between genetic make-up and tendency to disease, but also associations relating to behaviour, and other psycho-social characteristics which should not be the concern of anyone, perhaps not even the individual himself or herself. |
| It is for this reason that stringent precautions have | to be taken to ensure that information relating to genetic studies is obtained only under strict guidance, and that such information is protected from the prying eyes of third parties who could obtain financial benefit from such knowledge. The current Data Protection Bill currently being considered by Parliament goes some way towards ensuring such privacy and protection. |
| Coming now to the other end of the spectrum of human | existence, we find a number of issues that also raise questions relating to the ethics of behaviour. We have heard speakers discussing the role of palliative care for the terminally ill, and balancing this against euthanasia, which in some countries is considered to be another option. In a pluralistic society we have to be prepared for a diversity of views and resultant expectations and requests. Ideas relating to euthanasia are not absent even in our largely catholic society. The man or woman in the street may sometimes be heard to remark that they would not be prepared to go through what a relative had gone through – indicating that they would take more drastic steps to bring things to a definite conclusion. It is important to clarify that while the end is inevitable, pain and suffering are not necessarily so. Hence the importance of today’s talks relating to the significance of spiritual values and the role of palliative care. |
| None of these questions are easy. None can be | resolved by glib statements and rash judgements. Moreover, there will always be those who hold opposite views to those held by the practitioners of the health professions. It is none the less incumbent on us to make sure of a number of things: |
| Firstly that the relevant information is available | for all those who seek it, and particularly for those requesting a specific test or a procedure. |
| Secondly that we, as members of the health | professions have informed opinions on these issues. This involves not only a solid scientific application of established practice, but also a sensitivity to local cultural mores and expectations. It also assumes that we ourselves have a mature opinion of these issues, which comes from knowledge and reflection. Conference and publications by the Bioethics Committee, including that of a regular Newsletter, should also help in this respect. |
| I believe it is also imperative that guidance on such | matters should come from those in authority. The Data Protection Bill I mentioned already is a step in this direction. I am also now in a position to report that the Government, after consultations with all interested parties, will shortly be deciding to sign the Convention of Bioethics and its Protocols. This Convention would ensure that issues mentioned today relating to the use of genetic data, as well as other issues relating to bioethics and health will be respected. |
| Finally, I would like to thank all speakers for their | participation in this important meeting, which I am sure has clarified several of the issues I have merely touched on. We all look forward to read and reflect on their comments when the Bioethics Committee will publish these Proceedings as has occurred in previous years. I would also like to thank the members of the Bioethics Committee for the work they are doing. |
Share this Press Release
Other Press Releases:
PR261926
STQARRIJA MILL-UFFIĊĊJU TAL-PRIM MINISTRU “Sodisfatt bil-qbil bejn il-mexx...
PR261925EN
PRESS RELEASE BY THE MINISTRY FOR EUROPEAN FUNDS, SOCIAL DIALOGUE AND CONSU...
