Complaint lodged with the Human Rights Commission over eugenics paper
Saving Downs has lodged a complaint with the Human Rights Commission over views expressed in the recent publication of a paper in the New Zealand Medical Journal that promotes eugenics against the Down syndrome community.
In the paper, bioethicists from the Otago University Bioethics Centre present a case for eugenics under the justification of “doing the most good” due to the “perceived disadvantages” of the life of a child with Down syndrome. In their paper they state:
“First, we value an ethic that stresses the importance of ‘doing the most good’. On these grounds we accept that in some cases, the perceived disadvantages resulting from a Down syndrome pregnancy (to child and family) may outweigh the perceived good from the child’s life.”
Saving Downs view the selection of the type of child to be born based on a “perceived disadvantage” as discrimination and a form of eugenics.
The views expressed in the paper are in direct conflict with the UN Convention on the Rights of Persons with Disabilities (CRPD), to which New Zealand is a signatory. The purpose of the CRPD is articulated in Article 1 as:
“To promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.”
Saving Downs Spokesman Mike Sullivan explained that “Article 8 of the CRPD requires the adoption of immediate and effective measures to combat stereotypes, prejudices and harmful practices relating to persons with disabilities.” Mr Sullivan also observed that the published paper undermines respect for difference and diversity that is required under Article 3.
Mr Sullivan said that their complaint “requests that the Human Rights Commission condemns the views expressed in the paper and takes immediate and urgent steps to protect the Down syndrome community against eugenics to ensure their fundamental rights and freedom.”
Mr Sullivan concluded by saying that “The publication of views that children with Down syndrome are a perceived disadvantage, and that not having them in our society is “doing the most good”, are totally unacceptable. The Human Rights Commission must protect the rights of children with Down syndrome to be born into our society without prejudice.”
For more information see this blog.
Update 3 April 2013
The Human Rights Commission has responded to our complaint regarding the Otago University bioethics paper on screening for Down syndrome. They have said that the paper raises serious human rights issues needing the commissions attention. The HRC is developing a work plan around bio-ethical issues and disability, and will be incorporating into this plan work in direct response to the article.
On 31 March 2013 TV1’s Q&A programme covered this complaint. There are three parts to the feature, the interview with Rob Cole co-author of the paper and Mike Sullivan of Saving Downs, the interview with the NZ Disability Commissioner and the panel discussion. There is a video and transcript for each of those at this link. You can also go to the on-demand episode of Q&A for 31 March 2013 and it starts at 25 minutes.
very good.
It seems like the intended meaning of the paragraph is not the same as what the Saving Downs Spokesman is arguing against. Reading the paragraph in context of the full paper, the bioethicists do not mean ‘the greater public good’ when they say “doing the most good”. They mean doing the most good for each family, which would involve the mother weighing up what she perceives to be the disadvantages with what she perceives to be the positive aspects. This applies to the decision to have the screening test as well as to the decision of whether to continue or terminate the pregnancy. The mother can then choose the option she perceives to do her “the most good”.
The paper does stress the importance of preventing screening tools which are designed to assist decision making from becoming akin to eugenics. I think that prenatal screening is not a eugenics program as long as neither the government, nor the health practitioner, nor anyone else influences the decision made by the mother and family. The fact that about half of woman do not opt into the screening program and that not all of those who receive poitive results will terminate the pregnancy seems to support the argument that this is not eugenics as it is the individual who makes the decisions. The mothers who do decide to terminate their pregnancy are not doing so to prevent certain genetics from entering the population, they are choosing what they believe will be best for themselves and their families.
This brings us to the question of whether mothers should be allowed to make these types of decisions which clearly have a big impact on the potential child. A question which New Zealand policy has decided upon, but which individuals will strongly disagree.
Thanks for your comment. This blog here deals with the bias in the medical profession in New Zealand and how mothers are being influenced and pressured towards terminations. https://www.savingdownsyndrome.org/mothers-being-encouraged-to-have-late-term-abortions-for-down-syndrome-and-spina-bifida/
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