Well, actually, at the time of this writing, neither national Down syndrome advocacy organization has issued a statement concerning the Supreme Court’s overturning of Roe v. Wade in the Dobbs v. Jackson Women’s Health Organization decision, issued Friday, June 24, 2022. Here’s what they should say:
On its homepage, the National Down Syndrome Society (NDSS) touts itself as “the leading human rights organization for all individuals with Down syndrome.” On the day the Supreme Court issued the Dobbs decision, the National Down Syndrome Congress was holding its annual conference in New Orleans, Louisiana. Both organizations had, since the leak of the draft opinion in May, weeks to prepare a response. But neither has yet to issue one. So, I seek to assist the organizations who are the national advocates for my daughter by providing this proposed statement publicly.
PRESS RELEASE: In the wake of Dobbs, National Down Syndrome Organizations say Down syndrome should not be used as an example for reasons to have an abortion, medical providers must accurately counsel patients, & any abortion bans must retain an exception in the case of rape
(Atlanta/New York) (DATE) — The Supreme Court has overturned Roe v. Wade remanding the issue of whether women have a right to an abortion to the individual state legislatures. Our national organization represents individuals with Down syndrome and their families in every state in the nation: in states with trigger laws banning abortion, and in states with trigger laws preserving a right to abortion. Our constituents’ positions on abortion are as varied as those held across the nation. In light of these disparate views, we take this opportunity to boldly state what we as advocates for lives with Down syndrome must say for our present and future members:
Down syndrome should not be used as an example for reasons to have an abortion.
When Roe v. Wade was decided, prenatal genetic testing was in its infancy. The two issues of prenatal testing and abortion have been inextricably intertwined ever since. But just as much of the science and technology have progressed in the field of prenatal genetic testing, so, too, has much progress been made for those living a life with Down syndrome.
In the early 1970’s, it was still standard practice for medical providers to counsel their patients to give their newborn babies up to state institutions. Now, best practices are for medical providers to first congratulate parents on the birth of their baby with Down syndrome and to provide their patients with resources detailing the multitude of public and private supports available for people born with Down syndrome, including state-subsidized early intervention therapies and local and national support organizations like ours.
As a result of these decades of progress, people living a life with Down syndrome and their families are living fuller, more educated, more employed, and more integrated lives with their communities than ever before! For this reason, we call on medical providers and those engaged in policy debates over whether and to what extent women should have access to abortion to cease using Down syndrome as a reason for why abortion must be available.
The dissenting justices in Dobbs specifically cited Tay-Sachs as a “severe physical anomaly” for which women must have abortion as an option due to being a childhood terminal condition. On the day Dobbs was issued, CNN commentator Ana Navarro-Cardenas cited her step-granddaughter who has Down syndrome as an example for why abortion must remain available for all women. But as the pro-choice author S.E. Cupp tweeted in response:
The same is true about children with Down syndrome. No longer should they be used as an example for having an abortion, and “Down syndrome” should no longer meet any exception to an otherwise abortion ban as a “severe” or “serious” “anomaly.” Down syndrome is not a condition that is incompatible with life, which should be the standard for any anomaly exception.
Medical providers need to provide accurate information about Down syndrome and all available options, including adoption
In addition to certain states having triggering laws banning abortion in the wake of Dobbs, it is expected that the challenges to the so-called “Down syndrome abortion ban” laws will now be rendered moot, as they were based on Roe and Casey‘s viability and undue burden standards, which have been overruled. This is why it is all the more important for medical providers to counsel their patients in a pre- or post-natal setting with accurate information about what a life with Down syndrome can be like and the available resources for them.
We agree with the following statements made in the joint response to Dobbs by the American Society for Human Genetics(ASHG), the American College of Medical Genetics (ACMG), and the National Society for Genetic Counselors (NSGC):
Further, healthcare professionals bear ethical and legal responsibility to provide complete, accurate and unbiased medical information and the full spectrum of options to their patients. All patients want and deserve evidence-based, comprehensive information, free from discrimination or coercion, to make their own informed family choices.
We agree, but unfortunately, since the advent of prenatal genetic testing, study after study has found that too often medical professionals fail to meet this standard of accurate, unbiased information when counseling their patients about Down syndrome, particularly in the prenatal setting–even when the ACMG and the NSGC, have had for years concise lists of helpful resources for patients. Given that bans can be expected in some states, this is why it is all the more important to accurately counsel patients receiving a test result for Down syndrome, and, particularly in the prenatal setting, inform these patients of the National Down Syndrome Adoption Network, which maintains a registry of families waiting and wanting to adopt a child with Down syndrome.
Due to the increased risk of sexual abuse on females with Down syndrome, any abortion bans must provide an exception for rape
As an advocacy organization, we must advocate for all our members across the fullness of their lifetime. Tragically, while all women face too high a risk for sexual abuse, it is significantly higher for our female members with Down syndrome. Further, while most men with Down syndrome are sterile, that is not the case for women with Down syndrome. Therefore, as we enter this new phase of reproductive rights and abortion access in the wake of Dobbs, we call on all policymakers to ensure whatever measures they take concerning abortion access, they must provide for a rape exception. This is not because we are advocating for abortions, even in the case of rape, but as a matter of justice, those most vulnerable amongst us should not face the high risk of sexual abuse without having at least the option of abortion should they be the victims of rape.
# # #
Press Contacts:
Mark W. Leach, J.D., M.A. (Bioethics)
Email: mleach@markwleachlaw.com
Twitter: @MarkWLeach
Recent Comments