In a first for any US State, Louisiana is poised to pass a new law that prohibits the presentation of pregnancy termination as an option in written information provided to parents when receiving a prenatal diagnosis.
Currently in the US, there is a national model that will lead States to the “Lettercase booklet”, a prenatal resource for parents expecting a child with Down syndrome that includes references to abortion as an option following a prenatal diagnosis. The Bioethics Defense Fund drafted the new non-discrimination language for the Louisiana bill.
The proposed law will firstly require the Department of Health and Hospitals to supply expectant parents with current, evidence based, written information about Down syndrome when receiving a prenatal diagnosis. The information:
“Must have been reviewed by medical experts and national and local Down syndrome organisations.”
“Designed for use by an expectant parent who receives a prenatal test result for Down syndrome or a parent of a child who receives a diagnosis of Down syndrome.”
The proposed law then addresses prenatal discrimination by prohibiting the presentation of pregnancy termination as an option in any written information about Down syndrome that will be provided to parents when receiving a prenatal diagnosis.
That information must meet certain criteria, including that it:
“Does not engage in discrimination based on disability or genetic variation by explicitly or implicitly presenting pregnancy termination as a neutral or acceptable option when a prenatal test indicates a probability or diagnosis that the unborn child has Down syndrome or any other health condition.”
This approach is spot on. When dealing with issues around prenatal discrimination, the correct approach from a disability rights perspective is to uphold the principles of non-discrimination and equal treatment under the law. This, by definition, would exclude resources that present abortion as an option following a prenatal diagnosis of Down syndrome. We don’t present that option when the sex of an unborn child is determined, because that would be discrimination on the basis of sex. We shouldn’t present that option when the genetic difference of an unborn child is determined, that would be discrimination on the basis of genetic variance. Presenting abortion as an option lowers the dignity of the child, their parents and those living with Down syndrome. Those with Down syndrome have the right to be born free from discrimination, just like everyone else.
The provision of the “abortion option” in prenatal resources relating to Down syndrome has, however, been controversial in the US over recent times. David Tolleson, executive director of the National Down Syndrome Congress is quoted in this article as saying:
“As an advocacy organisation, we don’t feel it’s appropriate to promote the value of those with Down syndrome while at the same time also discussing the possibility of abortion.”
“Our self-advocates told us that it was not appropriate in a pamphlet coming from their advocacy organisation to talk about abortion as co-equal to any other option. They did not feel that was respectful to them.”
We endorse Tolleson’s position and those of the self-advocates. Offering an abortion following a prenatal diagnosis is incompatible with promoting the inherent dignity of those with Down syndrome.
We have always acknowledged that mothers entering a screening pathway have wanted pregnancies and are seeking trusted health care for the safe birth of their child. When faced with an unexpected diagnosis, the dignity of the child has not changed, and neither should the focus on the safe birth of the child. Selecting the type of child to be born based on genetic difference is discrimination and a form of eugenics.
The New Zealand Down Syndrome Association (NZDSA) has a similar view to Tolleson’s in their position statement on terminations:
“The NZDSA does not consider Down syndrome in itself a reason for termination.”
Last year we joined the International Down Syndrome Coalition and the Jerome Lejeune Foundation in a joint brief to the US Supreme Court, urging the Court to address inequalities that discriminate against those diagnosed prenatally with Down syndrome. As outlined in that brief, there is no right to pregnancy termination due to a prenatal diagnosis of Down syndrome. The Supreme Court brief was filed by the lawyers of Bioethics Defense Fund, who are leading the US initiatives against prenatal discrimination.
The Louisiana legislators are correct in ensuring that the provision of information for expectant parents does not engage in discrimination based on disability by prohibiting the presentation of pregnancy termination as an option following a prenatal diagnosis of Down syndrome. They are to be congratulated for their clarity on this issue and for taking positive effective steps to address prenatal discrimination. Thank you!
The proposed law is progressing through the Louisiana State Legislature where it has passed through the House unanimously and is now headed to the Senate. It is expected to be passed as a formality.
We look forward to further States and other jurisdictions following the Louisiana example and upholding the principle of non-discrimination in relation to prenatal diagnosis.
The proposed law was passed unanimously by the House of Representatives and the Senate and signed into law on 31 May 2014.