National Down syndrome organizations respond
“We do not take a position on women’s reproductive rights,” says NDSC spokesperson Sue Joe. “We strive to reflect the wishes and values of our members, and represent thousands of families, who would describe themselves as both pro-life and pro-choice.
“While recognizing the options that are legally available to women, we have heard from self-advocates that they do not believe it is respectful for their national advocacy organization to present pregnancy termination, based solely on the presence of Down syndrome, as being co-equal to other options.
“Preliminary feedback from healthcare providers has revealed that most do not expect abortion to be discussed in information produced by advocacy organizations, and they remain willing to share the material with their patients.”
NDSC insists, “We have no desire to stop the Lettercase materials from being distributed,” Joe says. “There are significant costs related to those materials which we find problematic. Instead of using NDSC dollars to support Lettercase, we felt it was more appropriate to produce materials more in line with our vision, and make them available at no cost.”
In addition to citing cost concerns, NDSC’s Joe says, “The NDSC is a partner with Global Down Syndrome Foundation in the DownSyndromeTest.org website and its related materials. The pamphlet is free for download, and the print version is free in any quantity to healthcare providers, patients and NDSC affiliate organizations.”
Should physicians carry sole responsibility to discuss all options?
“The NDSC/Global pamphlet leaves the discussion of termination to the healthcare provider; however, we don’t believe that results in a ‘distinctive pro-life stance,'” Joe says. “We believe this website and pamphlet help to meet our goal of getting accurate information into the hands of expectant parents at no cost to the patient or physician.”
The Global Down Syndrome Foundation (GDSF) explained this stance further.
“The Down Syndrome Prenatal Testing Pamphlet does not have a distinctive pro-life stance, although we would definitely agree that our pamphlet and information ‘does not include a section on termination,'” says Michael Bryant, spokesperson for the Global Down Syndrome Foundation.
GDSF listed these reasons for continuing to distribute its literature and not Lettercase:
- Our partner NDSC canvassed its self-advocates and families and concluded it was inappropriate to include such a section
- Global researched what information other prenatally diagnosed conditions and diseases provided and the overwhelming majority did not include termination in their information
- Looking at the Mayo clinic site and other medical websites providing information on Down syndrome and/or prenatal testing for Down syndrome the overwhelming majority did not include termination
- Even the prenatal testing companies do not provide information about termination in their materials
- Most people in the Down syndrome community know that termination rates associated with a diagnosis of Down syndrome via amnio are very high — obviously the information about termination is getting to the pregnant woman
- The Down Syndrome Prenatal Testing Pamphlet has been delivered to an estimated 100,000 pregnant women, mostly via doctors and other medical professionals, and the lack of information about termination is not interfering with the distribution or delivery of the pamphlet to pregnant women.
Inquiries to multiple Down syndrome advocacy organizations yielded similar responses — “We’re pro-information, not pro-life or pro-choice.” One of the two biggest national advocacy associations, the National Down Syndrome Society, did not respond to emails asking specific questions about its stance on Lettercase. After a third inquiry from SheKnows, NDSS referred us to its website position statements, including this language:
“NDSS recognizes that there are several reasons that one might choose to undergo prenatal testing and screening, which can include: advanced awareness on Down syndrome, adoption, or termination. In all cases, upon receiving a positive diagnosis of Down syndrome, the woman and family should be provided with accurate, up-to-date, and balanced information about Down syndrome.”
Paying a price for advocacy
Yet, NDSS does not distribute Lettercase materials, and its rhetoric doesn’t wash with Dr. Skotko. He emphatically endorsed Lettercase and, according to sources close to both parties, was dismissed from NDSS’s Board of Directors as a result of his stance.
Biotech companies with prenatal tests available today each were asked by SheKnows to respond to concerns that their faster, less-invasive tests will lead to more pregnancy terminations, and whether they felt a responsibility to provide updated, accurate information on Down syndrome to patients.
- Sequenom spokesperson Dan Ketcherside declined to respond to SheKnows’ specific questions, explaining: “This is such a personal issue and not one that companies or commercial entities should be involved with in my opinion.”
- Suzanne Yokota, spokesperson for Verinata Health, a subsidiary of Illumina, declined to comment citing SheKnows’ deadline.
- Prenatal test company Natera did not respond to SheKnows’ request for comment.
- Jen Bruursema, spokesperson for Ariosa, reported that its laboratory tested more than 40,000 pregnant women in the third quarter of 2013 and more than 150,000 women since commercial launch in 2012. “Parents have made, and will continue to make, important choices in follow-up, and we do not influence the beliefs or biases of individuals,” Bruursema says. “What we provide is more accurate information. We believe that the more informed a mother is about her baby, the better prenatal care she will receive and the more prepared she will be for the decisions of her pregnancy.”
“If advocacy organizations are ‘pro-information,’ then there should be no hesitancy to simply list the pregnancy options that are legally available to women in the U.S.,” Skotko argues. “Simply listing the options, as is done in the Lettercase materials, is not the same as an endorsement. I know of no evidence to suggest that simply listing the option of abortion causes more women to consider having abortions.”
The need for physician buy-in
Skotko and others point out that any group can develop materials and distribute them to physicians for use in informing patients — but if the physician doesn’t agree with the language, the literature will simply gather dust.
“Physicians are the gatekeepers,” Skotko says. “They are the ones who will be delivering the prenatal results, and they might be the only ones to present information about Down syndrome to expectant couples. Physicians are understandably reluctant to distribute [materials] they might perceive as biased ‘parent propaganda.’
“As such, advocacy organizations need to work with medical professionals if they would like their materials to be distributed. Otherwise, pamphlets will be created, but ultimately they’ll never be distributed. So, what then, was the point?”
A call for leadership
Unwilling to give up, Skotko continues to encourage collaboration. Notably, he grew up with a younger sister with Down syndrome and has been an advocate for individuals with Down syndrome his entire life, socially and now professionally.
“The moment for leadership is now,” he says. “Each day, expectant parents are receiving a prenatal diagnosis of Down syndrome, and I would bet that most of them are still not receiving accurate and up-to-date information. Only when the Down syndrome organizations advocate with a consistent message in collaboration with medical organizations can we really expect to see reasonable change.”
As Lettercase’s Meredith says, “While we understand that the mention of termination can be difficult for some, the priority is to make sure that lifelines of information about Down syndrome are ultimately given to patients by their medical providers during that critical moment of diagnosis.”