Groups announce consensus on prenatal screening and testing
June 27th, 2009Two national organizations representing people with Down syndrome announced this week that they have reached a consensus with representatives of three national groups of medical professionals to establish common ground on prenatal screening and testing.
In a press release, the organizations said the coalition had agreed that health professionals and the public need non-judgmental, non-coercive, balanced, up-to-date, and accurate information about Down syndrome. They identified possible areas of collaboration for the future, and said dialogue among the groups was moving them toward “greater mutual understanding.”
Entitled “Toward Concurrence: Understanding Prenatal Screening and Diagnosis of Down Syndrome from the Health Professional and Advocacy Community Perspectives,” the document was endorsed by representatives of the National Down Syndrome Society, the National Down Syndrome Congress, the American College of Obstetricians and Gynecologists (ACOG), the American College of Medical Genetics, and the National Society of Genetic Counselors, according to a press release from NDSS and NDSC.
The consensus agreement emerged out of a two-day meeting last fall that was hosted by the University of South Carolina’s Genetic Counseling Program and the University’s Center for Disability Resources. It follows recommendations by ACOG that all pregnant women regardless of age be offered prenatal screening and testing for fetal chromosomal abnormalities.
The document sets out the following areas of consensus among the groups:
- Balanced, accurate public information on the lives and value of individuals with Down syndrome is needed;
- Health professionals need education about Down syndrome that is based on the most up-to-date information;
- Education for expectant parents regarding prenatal screening and testing should be consistent; and
- Information for parents receiving a genetic diagnosis should be complete, consistent, non-judgmental, and non-coercive.
The coalition also attempted to dispel what it termed “apparent misperceptions” about prenatal testing among the general public, advocates and health care professionals. The consensus document made the following assertions:
- It is a misperception to say that obstetricians are recommending prenatal tests to reduce the number of individuals in society who have birth defects and genetic conditions;
- It is a misperception to say that the purpose of offering prenatal diagnosis to all pregnant women is to decrease the number of births of children with Down syndrome;
- It is a misperception to say that ninety percent of pregnancies prenatally diagnosed with Down syndrome are terminated;
- It is a misperception to say that NDSS and NDSC are pro-life organizations;
- It is a misperception to say that genetic counselors with master’s degrees influence parents to accept pregnancy termination; and
- It is a misperception to say that prenatal screening and testing are performed exclusively to detect Down syndrome.
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July 1st, 2009 at 9:45 pm
I think Kathy is right that the pressure to terminate a pregnancy after a positive diagnosis of DS does indeed exist. It happens way too often. I have to second abby’s comment, though, that culture highlights a problem that already exists…the quest for perfection. If doctors didn’t have the tests to offer, patients would still harbor the same desire and find another way to meet their agendas.
June 30th, 2009 at 8:56 pm
“I don’t think that there was ever any doubt that NDSS and NDSC are not pro life organizations, so I don’t know where that ‘misperception’ came from.”
Of course the national groups are not pro-life organizations. I’m wondering, though, if the misperception came from the medical outreach efforts of parents or parent groups whose admirable zeal was overshadowed by both a lack of training from other more experienced leaders and/or an axe to grind over the emotional scars from their own experiences.
Healthcare professionals may have interpreted the sole purpose of these well-meaning individuals as being to eliminate abortions of babies with DS (pro-life) and then made the leap from this being not just local but national as well.
June 30th, 2009 at 5:41 pm
Kathy, while I hear where you are coming from on the misperceptions, I feel like consensus is such an incredibly hard thing to find in any situation, and at some point it becomes vital to find what common ground you can, and to compromise. I also feel that in conversations with doctors, geneticists and genetic counselors that I have met doing outreach work, while we might not always see eye to eye on everything, most are genuinely not out to harm people. They believe that they are doing good.
That being said, there is an incredibly strong bias in our culture and our society against anyone who can be defined as “imperfect”. As I see it, the genetic testing scenario illustrates and exacerbates an existing problem in our society, but these doctors are not the cause. And if we are going to get them to take us parent groups seriously, we need to do what we can to work toward that common ground.
There is much work to be done, but it is heartening to have this piece of info in the toolkit when working with the medical community to try to make some change happen.
June 29th, 2009 at 11:18 pm
The consensus part looks good, but the ‘misperception’ part is a bunch of hooey, imo..
I don’t think that there was ever any doubt that NDSS and NDSC are not pro life organizations, so I don’t know where that ‘misperception’ came from.
and from what i have read/heard- many parents experienced a great deal of pressure to terminate a pregnancy once a diagnosis of DS has been obtained.
If the purpose of prenatal testing is not to weed out genetically ‘inferior’ children, why is so much emphasis being placed on developing new, more ‘accurate’ and earlier tests? DS cannot be treated in utero at the present time — why the push to find out so early if termination of affected fetuses is not the goal?
I also think that it was interesting that there were no representatives from Affiliates in Action invited to be part of this. I would have thought that Mark Leach would have been able to offer very valuable insight on this,so it is disappointing to see that he was not offered the opportunity to participate.
June 29th, 2009 at 12:38 pm
Yes, it is indeed heartening to hear the term “consensus”. Music to my ears. Thanks to all who worked on this, and let us all move forward on getting that good information out there. What a nice story to read in the wake of my little girl’s 3rd birthday!
June 29th, 2009 at 11:13 am
I think this is a step in the right direction and I am hopeful for continued dialog with ACOG. I’m not as concerned about past misconceptions as I am about where we are going. As long as companies such as Sequenom target specific prenatal diagnosis, such as Down Syndrome, I believe the perception will remain that the medical community has sinister plans in mind for us.