No care for rights of trial babies

It is a devastating blow for Baby A

It is a devastating blow for Baby A. He had been pinning his hopes on the Government's heartfelt promise to "move heaven and earth" to find out what had happened to him. Now, it seems, they just don't care any more.

This relates to Minister for Health Mary Harney's blunt announcement during the week that there will be no further examination of the experimental vaccine trials carried out on babies and children, many of them in State care, during the 1960s and 1970s.

Baby A, as he is referred to in the files, is the only person to have come forward publicly who has had it confirmed to him that he was a subject of such experimentation.

I first met him over two years ago. While concerned about his family's privacy, he felt that if he told his story, if people could identify with a real person who had been through this experience, then perhaps it might spur the Government towards fulfilling its commitment to investigate the matter.

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He preferred that his true name not be used, so we decided to call him Peter. At the age of four months he was injected with the experimental four-in-one or Quadrivax vaccine. This was in 1960, and Peter was in the Bessboro Mother and Baby Home in Cork, an institution that received State funding.

It should be pointed out that what motivated doctors involved in this kind of medical experimentation was the greater good of society: the development of more effective protection against killer diseases while minimising side effects.

However, what was always of enormous public concern with regard to these trials was that they were carried out on children and babies in institutions, bereft of the protection of their families, and that the issue of consent was disturbingly unclear.

For instance, Peter told me that his mother maintained she was never asked to give consent for her baby to be part of such a trial, and that she was told nothing about it.

While there is no evidence that anyone was injured or has long-term health consequences as a result of the trials, Peter has been profoundly affected by the knowledge of what was done to him. He has a myriad of questions as to how and why he, as a tiny, helpless baby, ended up as part of a medical experiment.

What hurts him most is that these questions have never been asked - and now, thanks to Mary Harney, they never will be. He believes that the drug company (Wellcome), the doctors involved and the nuns who ran the home should all be asked to account for their roles in the vaccine trials, and in particular for the decision to use a population of children cut off from their families and thus acutely vulnerable.

Peter has found out that 58 other babies were involved in his own trial, which spanned five mother-and-baby institutions. If you include the other vaccine trials in subsequent years, it has been estimated that up to 300 children were subject to medical experimentation of this kind.

The fundamental issues raised by these trials were fully recognised by former minister for health, Micheál Martin. In a superb speech to the Seanad in 2000, he enunciated with passion and clarity the duty of the State to vindicate the rights of vulnerable children. He listed a number of important questions to be raised, but quite correctly honed in on the issue of consent as being crucial in this context.

He decided that the child abuse commission should investigate the matter, as it was already inquiring into the entire area of children in institutions. However, after a series of successful court challenges from some of the doctors involved, the commission was essentially precluded from further investigation into the vaccine trials.

There was nothing, however, to prevent the inquiry proceeding under a different aegis. It would have meant the formation of a separate investigative framework - a nuisance, perhaps, but hardly insurmountable.

According to Micheál Martin, the decision to hold an inquiry in the first place was "based on the rights of those involved, who are entitled to a thorough, wide-ranging and public investigation of the ethical issues involved". This was, he said, "the ultimate guarantee against a cover-up or whitewash".

So what has changed in the intervening years? Have Peter and those like him lost their entitlement to an investigation? Are their rights no longer important? Have issues of consent for babies in medical experiments and the ethics of such practices suddenly become irrelevant? Does no one care about cover-ups and whitewashes any more

Mary Harney's decision to terminate all investigation is a cruel and cynical exploitation of the fact that people's memories are short and that public outrage, no matter how justified, has a frustrating habit of diminishing over time. Fudge an issue long enough and people will lose interest. Unless of course you happen to be Peter or one of the other 300 who deserve to know how they, as tiny, voiceless infants, ended up as subjects of medical experimentation.