Bioethics report recommendations have “lost the plot”

The just-released report from the Bioethics Council about pre-birth testing has delivered recommendations that fail to protect disabled people from a ‘designer baby’ future. Gary Williams, CEO of DPA says the recommendations will simply reinforce disabled people’s concerns that their lives have a lesser value, and are poorly protected.

“The report talks of valuing diversity, the intrinsic worth of disabled people, and how society’s values are important. But then it says the decision is best left up to parents alone, with the help of some information and no pressure on them. I can’t see how asking parents to choose more things about PGD when disabled lives aren’t given a high enough value right now” he says.

DPA president Mike Gourley is concerned that the report confuses what disabled people want with what parents of disabled people want. “They are absolutely not one and the same thing” he says, “and it’s really inaccurate to imply they are. What this muddle-up does is make us feel really unsafe, and wonder if anybody really listened to what disabled people said”.

The report used a process new to New Zealand called deliberation to find out what people thought about pre-birth testing. In deliberation people discuss the issues using everyday language and without experts telling them what should happen. It’s a process national policy researcher Wendi Wicks says showed promise.

“The opinions were allowed to develop more, and that’s very good. But there was also a strong push to develop a small number of story lines, and the consistently expressed views around valuing disabled lives equally got squeezed to the margins of story lines they didn’t really fit. That’s not good at all.
What’s happened is that the talk about recognising the value of disabled lives has become a recommendation calling for better coordinated support services for ‘the disabled’ and that’s a terrible distortion of the discussion” she says.

Meanwhile Gary Williams is left wondering what next. “There’s such a huge gap between the deliberation and the recommendations, you have to wonder where and when the council lost the plot. From such a promising process we’d hoped for a fair outcome. But it seems we’re still on the margins of recognition and fairness” he says.

ENDS

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