Health has denied us our rights

In light of Minister for Health, Leo Varadkar’s announcement today of new plans to improve patient safety, we look back at one of Mary’s articles from 2005 in which she expresses her frustration with the Department of Health.

Health has denied us our rights

February 3rd, 2005

The Department of Health has recently coined an interesting new line in official-speak. “Always under continual review” is the latest phrase, kindly provided to me yesterday when I asked the Department why it had not done what it had been saying for the past seven years it would do. My question concerned Ireland’s refusal so far to ratify the Council of Europe’s 1997 Convention on Human Rights and Biomedicine. Already signed by 31 European states, the convention now sets the world standard for ethics in medical research and experimentation. Its focus is firmly on rights, underlined by its statement of the primacy of the human being: “The interests and welfare of the human being shall prevail over the sole interest of society or science” (Article 2). Given that much medical research has in the past put the good of society controversially above that of the subjects of such experimentation, this is an important principle to which all civilised countries should subscribe. And yet, Ireland demurs.

The reasons given are spurious. Several ministers for health have explained over the years that the problem concerns provisions in the convention dealing with embryo destruction. But the convention does not deal in any detail with embryo research or destruction. What it does say is that where laws exist to permit such research (and they do not exist in Ireland), then such laws “shall ensure adequate protection of the embryo”. And that “the creation of human embryos for research purposes is prohibited”.  It is difficult to imagine what exactly the Government finds so objectionable in this. A further protocol specifies an outright ban on human cloning, which Ireland has also refused to sign and ratify. We are thus in the extraordinary position of having no legislative control of any kind over human cloning or in-vitro embryo research. But then, of course, we do have the great security of knowing that the Department is keeping the matter “always under continual review”. The other mantra trotted out to excuse our laxity in tackling this rapidly developing area of research is that we have to wait for the report of the Commission on Assisted Human Reproduction. The latter was appointed in 2000, and for two years its final report has been promised “within months”. We are still waiting.

The fact is that our obsessive concentration on reproductive issues has blinded us to the wider human rights which are the focus of the Council of Europe’s biomedicine convention. It deals in detail, for instance, with the issue of consent, especially for those unable to speak for themselves. It specifies children in this context, insisting on proper safeguards. It also states that consideration is to be given to the child’s own opinion “as an increasingly determining factor in proportion to his or her age and degree of maturity”. Irish law contains no specific protection for children in this regard. We have little excuse for complacency here, given our own examples of the controversial vaccine trials carried out during the 1960s and 1970s on babies in institutional care. At one stage considered a vital and urgent matter for statutory public inquiry, the important concerns raised have now disappeared into the Department’s “under review” category. This is particularly worrying as there are several medical professionals who indicated that as the greater good was served by such trials (i.e. the march towards the elimination of disease), there was nothing wrong with them. The matter of parental consent is seen as being less central in this context. However, it is precisely this balance between the greater good of humankind and that of the individual which the Council of Europe’s convention tackles so comprehensively, firmly placing the issue of consent at the heart of any ethical approach to medical experimentation. The convention also deals with issues such as organ retention, an area in which this country has a truly lamentable record. It specifies that fully informed consent must be obtained for any such removal and retention. Further provisions relate to genetic testing and specifically ban discrimination against people on the basis of their genetic make-up. This means, for instance, that insurance companies will not be able to deny cover to anyone with a genetic predisposition to particular diseases. Such discrimination is not yet banned by Irish law.

Overall, the Convention on Human Rights and Biomedicine is perceived throughout Europe as a fundamental statement of protection for all individuals. Some of the 31 countries that have signed up so far have done so with reservations, most of them minor. Each country can exclude any section while still committing itself to the bulk of the provisions. If the Government truly had a serious difficulty with a particular section or article, they could have excluded it. That Ireland has simply ignored the convention in its entirety leaves us as citizens bereft of a significant level of protection now enjoyed by most of our fellow Europeans.


This column has been republished by the MRJF with the kind permission of The Irish Times.

The featured image was downloaded from the Council of Europe’s official website.