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The University of Kentucky's Human Development Institute (HDI) is proud to announce the launch of The National Center for Prenatal and Postnatal Down Syndrome Resources.
The National Center includes the following medically reviewed programs: the recently updated Brighter Tomorrows website, the Lettercase/Kennedy Foundation booklet, and the Down Syndrome Pregnancy books and website.
The formation of this National Center is particularly important at this time as prenatal testing technology continues to advance, and medical providers and expectant parents need accurate, up-to-date, and balanced resources to understand a prenatal diagnosis of Down syndrome as described in the Prenatally and Postnatally Diagnosed Conditions Awareness Act, P. L. No. 110-374.
The National Center website provides a portal for medical professionals and new and expectant parents to find out about what each of these free and well-established resources offers. The activities of the National Center include the distribution of professional resources to medical providers and their patients both in print and online; the development of new materials; and national medical outreach through journal publications and presentations at medical conferences.
We invite you to share this resource widely and to utilize the National Center as a clearinghouse of reliable prenatal and postnatal information about Down syndrome.

There are now 2 pamphlets available for expectant parents and medical professionals providing information for expectant parents about Down syndrome that address the new non-invasive prenatal tests for Down syndrome. Questions have been raised about factual inaccuracies and unbalanced information in the pamphlet now available from national Down syndrome organizations that replaces the earlier collaborative effort. Hopefully these issues will be resolved with input from advocates from the medical community.

... As the parent of a child with Down syndrome, I know from experience that doctors, nurses, and other prenatal medical professionals are badly in need of accurate information about Down syndrome so they can deliver the life-changing news to expectant parents with as much clarity�and as little bias�as possible. For many families, and for many unborn babies, access to such information is literally a matter of life and death. ...

...This Consensus Group released an updated version of �Understanding the Down Syndrome Diagnosis� in 2010, making a free copy of the booklet available to anyone who requested it and posting a downloadable e-version online at www.Lettercase.org. The appearance of the document, now frequently referred to as �the Lettercase booklet,� was considered a major step forward in the quest to counter misinformation and equip expectant parents with the facts about life with Down syndrome.

�This booklet is the answer to the question, �What should be given to women when they get that prenatal diagnosis?�� Dr. Brian Skotko told me recently. A medical geneticist and co-director of the Down Syndrome Program at Massachusetts General Hospital, Skotko is a familiar face to those in what might loosely be called the Down syndrome community thanks to his blogging and media appearances. He has a sister with Down syndrome, and was involved in the crafting and editing of the Lettercase booklet.

Not long after our conversation, an interesting and entirely unexpected thing happened. NDSC and NDSS, the advocacy organizations that had participated in the creation of the Lettercase booklet, turned their backs on the effort and, along with the Global Down Syndrome Foundation, published their own informational pamphlet aimed at expectant families.

Earlier this month, Skotko was quietly removed from the NDSS board, and both NDSC and NDSS scrubbed all links and mentions of the Lettercase booklet from their websites.

Why the sudden disavowal of the work they had previously supported? Skotko expressed bewilderment. He told me that no explanation had been offered for his removal from the NDSS board. In a blog posting, he claimed that the new pamphlet contained factual errors. He told me that �unlike other booklets out there,� the Lettercase booklet wasn�t �propaganda.� When I asked him what he meant, he said, �Physicians need to make sure that they are presenting materials that are not lopsided or influenced by a condition-specific organization that just might be telling one side of the story.� ...

David Tolleson, executive director of the National Down Syndrome Congress: �As an advocacy organization, 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,� Tolleson told me.

Notably, he said, this sentiment was given voice within NDSC by so-called self-advocates, adults living with Down syndrome who are participating in ever-greater numbers in the outreach and education efforts of such organizations. ...

... I asked Skotko if the Down syndrome organizations had mentioned these concerns within the Consensus Group. �The information on termination was definitely discussed and agreed upon by NDSS, NDSC, ACOG, ACMG, and NSGC. All of the organizations signed off on the document, as documented on the back of the booklet,� he replied.

So why did NDSC and NDSS participate in the creation of the Lettercase booklet�and agree to put their names on it�only to withdraw support after it was published? Was it simply because the booklet mentioned abortion? Or was there something else?

Tolleson said there was: the difficult and rapidly evolving issue of prenatal testing itself.

Several new, non-invasive blood tests for Down syndrome have come on the market in the last year. These tests can be administered as early as the tenth week of pregnancy and are highly accurate when administered to pregnant women at �high risk� of having a baby with Down syndrome. This includes women over the age of thirty-five, those who have received a positive result from either an ultrasound or maternal serum screening test, and those who have at least one relative with Down syndrome.

The arrival of these new tests has added urgency to the discussion within the Down syndrome community about how best to handle the abortion-rate crisis. For some, the new tests are an improvement upon the older tests, which are less accurate and more invasive. Yet for others, like me, who think that these new tests will supercharge the already high rates of abortion of babies diagnosed with Down syndrome, there are some issues to sort out before boldly charging ahead.

Tolleson told me that concerns about the appropriateness and accuracy of these new tests informed the decision to back away from the Lettercase booklet. These new tests are �not diagnostic,� he said, meaning that they are not by themselves capable of definitively settling the question of whether a fetus has Down syndrome, and that the advocacy organizations wanted to emphasize this fact in their new pamphlet. According to the press release that Jon Colman of the NDSS referred me to, these tests are not recommended for women with low-risk pregnancies �because their accuracy has not yet been demonstrated to the medical community.�