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06/10/2014

Tragedy in Research History: The Children of Ireland

by Craig Klugman, Ph.D.

For many people, the film Philomena was an introduction to a history of Irish babies being taken from their unwed mothers and adopted to “good” Catholic families in other countries. I put “good” in quotes because often what qualified a couple was the ability to pay. In the last week, news has come out of Ireland of a mass grave holding the remains of 796 infants buried in a septic tank on the grounds of a former “mother and baby” home in Galway. These children died over a 36 year period of infectious diseases.

As if that news was not shocking enough, British newspapers have now reported findings from a historian at Cork University, Michael Dwyer, who has found evidence of illegal vaccine trials conducted on children in these care homes. He found that 2,051 children were allegedly given a one-shot diphtheria vaccine between 1930 and 1936 by a pharmaceutical company. Dwyer says that these trials were published in medical journals. No information on negative side effects or consent has been found. At that time, diphtheria was the third highest cause of death for children and infants.

A second revelation now shows that 58 children were given polio and diphtheria vaccines in a trial in 1960. The results were published in BMJ in 1962.

In a third revelation, nearly 300 children in care homes were used in medical trials in the 1960s and 1970s. The children were given an experimental vaccine used in cattle (reports have not indicated which vaccine). Eighty of the children are reported to have become ill.  The Mother Superior at the care home, Bessborough House, claims that parents gave consents but a child-subject related a story where his mother had no idea where he got marks from the many injections from.

All of the alleged trials were financed from the same drug company, Burroughs Welcome, which today is part of GlaxoSmithKline (also known as GSK). The Irish government has reacted to these reports by expanding ongoing investigations into the care homes. It’s also important to note that Ireland did not pass a law on medical testing until 1987.

In the U.S., these revelations are remarkably similar to the Willowbrook Hepatitis studies and the Guatemala Syphilis studies, some of which took place in orphanages. Children are among the most vulnerable of all individuals in society. They lack the neuroanatomical development to make the complex decisions necessary to way pros and cons in consenting to study participation. Thus, children rely on their parents and guardians, who are supposed to have the child’s best interest, to make those choices. Children lack autonomy, but their parents and guardians hold it in loco parentis. Even today, when parental consent for participation is necessary, the assent of the child is highly recommended.

More than a violation of autonomy and consent, these trials shine a focus on the low status that women, especially unmarried women, and illegitimate children had in Irish society. A baby born out of wedlock could not be baptized in 1930s Ireland and could not be buried in sacred ground. A woman who “lacked proper judgment” by having sexual relations outside of marriage (which surprise, sometimes leads to pregnancy especially when one doesn’t know about birth control, which is also immoral under Catholic teaching) was deemed incapable of making decisions for her baby or herself. This is a story about power, of the hierarchy of a male-controlled society judging these women as immoral and of trying to hide away those aspects of life that do not mesh with their fantasy mythology of how the world ought to work. The result was often that the children were taken from their mothers, used in trials without parental permission or knowledge, or perhaps worse.

These were not immaculate conceptions: A man had to be involved in the creation of these children, often born to very young women, and yet they were let off without moral condemnation.

As shocking and disturbing as these revelations are, learning about our history is an important step to making sure that the past is not repeated. When combined with other revealed abusive research trials on children, we must acknowledge the past, correct our mistakes, and make plans to avoid them in the future. We also must remember that our morals and views of 2014 have changed dramatically from what was considered social acceptably in 1950. This does not excuse such actions, but does give them context and perhaps helps us to understand that the people who run these trials are not monsters or psychopaths, but scientists and physicians trying to find answers to questions of life and death. The road to perdition, however, is paved with good intentions and broken lives.

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