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Parents of children with genetic conditions avoid further prenatal testing

Posted in Attitudes to disability, Diagnostic testing, Ethics, Screening, Termination by Matt at WelcometoIllinois on February 26, 2009

Research from the Egenis research centre at the University of Exeter suggests that parents of children with genetic conditions would rather avoid prenatal testing with subsequent pregnancies – and indeed actively avoid subsequent pregnancies – due to the the the moral or existential dilemma raised by the limitations for diagnostic testing.

This report from the University of Exeter notes that “more than two-thirds of parents in the USA-based study chose not to have any more children rather than accepting tests to identify or avoid the birth of an affected child. Of the parents who did have further children, a majority chose not to make use of prenatal screening or testing.”

Dr Susan Kelly, a Senior Research Fellow at Egenis said: “Many parents did not perceive the information they understood to be available from prenatal testing to be useful or relevant to their sense of responsibility and control. Experiencing the birth of an affected child for some parents exposed the limitations of medical knowledge and practice, and placed medicine alongside other forms of interpretation and evidence. Interventions such as genetic testing for many were associated with uncertainty and a loss of control for parents as responsible caretakers and decision makers.”

I would absolutely agree that the loss of control and sense of helplessness was one of the reasons I have such a negative view of pre-natal testing following our experience. I documented in Waking Up in Illinois how a desire to regain control over our situation almost drove us towards termination.

Given that termination is the only decision that will result in a definitive outcome and place us back in control of the situation, it begins to become almost the default option, even though it is not the decision that either of us want to take.

I cannot explain how glad I am that we did not take that decision but I can understand why for so many people it is the decision they take to regain control, and I completely understand why in subsequent pregnancies people would avoid losing control in the first place.

The full study, Choosing not to choose: reproductive responses of parents of children with genetic conditions or impairments, is available from Sociology of Health & Illness.

It also notes that “many parents did not perceive the information they understood to be available from prenatal testing to be useful or relevant to the circumstances of their reproductive decisions; that is, to their sense of responsibility and control” and that “Many parents expressed a significant disjuncture between biomedical views of genetic conditions or impairments and parents’ lifeworld experience.”

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