08 Aug Chloe’s Law Mandates Women Receive Positive Information About Down’s Syndrome
Medical Research: What is the background of the Down Syndrome Prenatal Education Act?
Dr. Caplan: For many years women who receive a positive prenatal test for Down syndrome have been aborting their pregnancies. Rates of pregnancy termination, while somewhat disputed, are very high. In the USA, UK and Denmark they have consistently been over 80% for many years. This has led some parents of children with Down to wonder if the counseling that women receive is biased negatively against a life with Down. They working with pro life legislators in many states have promoted legislation to insure that mothers carrying an infant with a diagnosis of Down Syndrome have access to positive information and helpful resources about life with a child with Down. This legislation has been enacted in many states and there is a Federal law as well.
Medical Research: How does Chloe’s Law impact genetic testing?
Dr. Caplan: These laws represent a seismic shift in counseling about genetic disorders and diseases. Historically counselors aspired to be value-free—simply trying to provide objective information to their patients/clients. With laws like Chloe’s the public is saying they do not trust the neutrality of counselors and counseling and want more positive messages sent about Down. This is quite simply an ethical revolution in how counseling for Down will be done in the future. It is also a direct
Challenge to the legitimacy of value-neutrality as a counseling norm that certainly will be extended to other conditions and disabilities where abortion rates are high and where there is the belief that there is unjustified prejudice or bias against disabilities among those working in clinical genetics.
Medical Research: What should clinicians and patients take away from your report?
Dr. Caplan: With the rapid evolution of cell-free genetic testing more and more pregnant women will receive genetic testing as the standard of care—it will not be confined in the future to those deemed at high ‘risk’. It is likely that patient advocacy groups, pro-life groups, disability organizations will press for more ‘balance’ in all genetic testing especially when language like ‘risk’ and ‘disease’ and ‘burden’ are in evidence in counseling or in the literature of clinical genetics.
Medical Research: What recommendations do you have for future research as a result of this study?
Dr. Caplan: It is time for those doing prenatal genetic testing to develop a response to the movement to enact laws like Chloe’s law. The field needs to know what its biases and prejudices might be, what women and their partners think about genetic disorders and differences, how values and messages are being communicated in marketing, in counseling sessions, in educational materials and other settings. To insist on value neutrality in the face of a fast-growing set of state laws and a Federal law indicated distrust and dissatisfaction with a value neutral ethic in counseling and in recruiting women to prenatal testing is not likely to prove tenable as genetic testing becomes, safer, cheaper and more widespread in the USA and in other nations.
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Last Updated on August 8, 2015 by Marie Benz MD FAAD