Thursday, 22 September 2016

Recent commentary on prenatal testing, disabled people's rights and women's rights

Annalisa Lista, WEST, 9 September 2016
There is a French court case that will certainly go down in history. The protagonists are 7 young people with Down Syndrome. They are appealing to the National Authority because of a decision by another French body (that evaluates content of advertising) to remove a commercial that tells young mothers who are expecting babies with Trisomy 21 to not be afraid. 

The commercial was taken off the air because it was considered ambiguous and discriminatory against women who, if in the same situation, would choose abortion. The participants in a widespread anti-abortion movement and the many associations that for years, have protected the rights of parents with children who have Down Syndrome, have a very different perspective. 

In fact, it was precisely these people who asked the children of the parents they represent (with Down Syndrome) to show up in court, without lawyers — to give more visibility to the case. Needless to say, they are against the French body that pulled the ad.

Disability rights and reproductive rights don't have to be in conflict
David Perry and Elizabeth Picciuto, LA Times, 29 August 2016
... Rather than limit women’s rights, we believe we must build a more understanding, accessible society that supports people with disabilities and provides services to parents. That’s how we can safeguard access to abortion while ensuring that it isn’t the only feasible option following a prenatal diagnosis.

The first step is to educate the public. Mass media and our politicians repeatedly send out the false message that disability equals suffering. Disabled people do suffer and struggle. But much of that suffering is caused by correctable injustices: lack of resources, lack of accessibility or lack of knowledge ...

NIPT or not to NIPT – is that really the question?
Jane Fisher and Professor Lyn Chitty, Bionews 864, 15 August 2016
... Uptake of Down's syndrome screening varies across the country, with an average of around 65 percent of women in England choosing screening. The other 35 percent either believe their risk is low or do not want to know whether their fetus has Down's syndrome. Among women who accept screening and are found to have a chance of >1 in 150, only around half undergo invasive testing, often because they don't want to put their pregnancy at risk ...

ACMG Releases New Statement on cell free DNA Prenatal Screening
Mark Leach, Prenatal Information Research Consortium, 4 August 2016
The American College of Medical Genetics and Genomics (ACMG) has issued a new statement on cell free DNA prenatal screening. As with its initial statement, the ACMG separates itself from existing statements and guidelines on cfDNA screening ...

Keeping the Backdoor to Eugenics Ajar?: Disability and the Future of Prenatal Screening
Gareth M. Thomasand Barbara Katz Rothman, AMA Journal of Ethics. April 2016, Volume 18, Number 4: 406-415
In this short commentary, we reflect on how ideas about disability intersect with prenatal technologies and what this likely means for the future landscape of reproductive medicine. In what follows, we assess the argument that prenatal technologies represent a form of “eugenics,” defined here as practices and policies designed to promote the reproduction of people with desired attributes—and, thus, avert the reproduction of people with undesired attributes (e.g., people with disabilities). The idea that the world and the people in it would be better off if everyone were born “healthy,” that is, without “defect,” is the essential principle of eugenics (translated literally as well-born) ...

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