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Some clarifications of Chloe's Law

Posted by MBradford on 18 Aug 2015 at 17:39 GMT

Dr Kaplan seems to misinterpret the meaning of Chloe's Law, and other similar legislation intended to ensure that women and their partners are fully consented following a positive prenatal diagnosis of Down syndrome.

He quotes from the law in his article, when he writes that the PA Dept of Health is required to provide "up-to-date, evidence-based information about Down syndrome that has been reviewed by medical experts and national Down syndrome organizations." a great deal of that information is positive, but the law does not exclude that abortion is mentioned as an option that some choose. Louisiana is the only state that has taken that path, and they have received criticism from the very advocates that have promoted these information laws in other states.

These laws are intended to remedy a long-standing omission in the discussion of Down syndrome - that 1.) parents who have children with DS report that they are happy; 2.) siblings report that they are happy and not ashamed of their brother or sister with DS, and; 3.) those living with DS themselves are happy with their lives (see B. Skotko's series of articles in the American Journal of Medical Genetics, Part A, 2011).

One would question how "neutral" the medical community has been on the topic of Down syndrome. The results of a 2013 poll published by Brianna Nelson-Goff and colleagues in the Journal of Intellectual and Developmental Disabilities called "Receiving the initial Down syndrome diagnosis: a comparison of prenatal and postnatal parent group experiences" are telling about how the medical community has managed prenatal diagnosis. 1 in 4 women report that their medical provider was "insistent" they terminate their pregnancy, and negative experiences outweigh positive ones 2.5 to 1. There is clearly a need for intervention to be certain women and their partners receive "up-to-date, evidence-based information about Down syndrome that has been reviewed by medical experts and national Down syndrome organizations" that is not reflective of the personal bias of some medical providers.

Lastly, Dr. Kaplan quotes from old research when stating that the termination rate in the US mirrors that of the UK. In 2011 a new study was published by Jaimie Natoli and colleagues that reported the termination rate in the US is 67%. That research was confirmed in a recently published statistical study by de Graaf, Buckley and Skotko in the American Journal of Medical Genetics. They project that the Down syndrome population has been reduced by about 30% because of the availability of prenatal diagnosis and abortion. Running the numbers on their study, and the US termination rate is very similar to what Natoli et al published.

Lastly, one must ask if neutrality in genetic counseling is just. Given the statistics disclosed by Skotko in his series of articles on families living with Down syndrome mentioned above, who would not want to encourage families to spare themselves the pain of choosing to abort an otherwise wanted child based upon the results of a prenatal test? Other choices can always be made, but most families report that when they have experience with individuals with DS, they realize they are really not that much different than anyone else. (see the Goff study)

Competing interests declared: I am the president of the Jerome Lejeune Foundation USA and we were involved in encouraging the introduction and passage of Chloe's Law.

RE: Some clarifications of Chloe's Law

MBradford replied to MBradford on 18 Aug 2015 at 18:13 GMT

I apologize for the misspelling of Dr. Caplan's name in my comments above.

No competing interests declared.