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BCACL Responds to Vancouver Sun Article on Prenatal Genetic Testing

The Vancouver Sun - June 18 edition - has printed a BCACL letter in response to their article titled "Women must now wait to 40 for publicly paid amnio test."

Letter to the Editor of the Vancouver Sun in Response to:

Women must now wait to 40 for publicly paid amnio test, June 9, 2009 - By Pamela Fayerman

Vancouver Sun
June 11, 2009

As President of the BC Association for Community Living (BCACL) and parent of a young man with a developmental disability, I found this article disturbing. BCACL is a non-profit organization that works to enhance the lives of people with developmental disabilities and their families by supporting abilities, promoting action and advancing rights, responsibilities and social justice.

We believe that people with disabilities make our communities better. As we prevent people with disabilities from being born, we are preventing our schools, neighbourhoods and workplaces from reaching their full potential. One of the dangers of using prenatal genetic testing to eliminate a population is that it assumes the person to be the problem – it fails to challenge the very systems that create social disadvantage and disability. As fewer people with Down syndrome and other disabilities are born, our society loses its diversity and vitality and the individuals we support become more vulnerable.

BCACL wholeheartedly supports a woman’s right to make decisions about her pregnancy. If prenatal genetic testing were being used to benefit women or society – and not to exterminate a population – this would be a different discussion. That being said, over 580 people with developmental disabilities, family members, and services providers recently attended the BCACL conference in Victoria where we addressed challenges and opportunities within our movement. It seems paradoxical that while people across BC are talking about rights and citizenship, another parallel conversation is being had – not about our friends, coworkers and classmates – but about their genetic traits.

There is no inherent suffering associated with down syndrome. A one-dimensional notion of suffering is not only unfair and unscientific, but dangerous. Quality of life assessments about people with disabilities must include perspectives from people with disabilities themselves.

As technology advances – as we are better able to screen for desirable and undesirable traits, we risk eradication of the diversity that makes our world beautiful.

We stand with the Canadian Down Syndrome Society when they state, We advocate that the primary goal of prenatal genetic testing should not be to reduce the birth prevalence of Down syndrome in the population but rather to provide opportunities to improve prenatal and delivery care for the mother and baby. (May 5, 2009 Press Release)