Today, I present at the American Society for Human Genetics (ASHG) conference. I will be meeting with representatives of prenatal testing companies and visiting their exhibit booths. Calling on the wisdom of crowds, leave a comment on what questions you would ask. (The conference is in Boston and Game 1 of the World Series is tonight at Fenway–feel free to leave a comment if you have tickets for me, too!).
October 23, 2013
Given their desire to provide better information to expecting parents, what efforts are the funding or supporting that will help genetic counselors better understand what a genetic diagnosis of DS really will mean for a family.
Clearly there is an informationn gap:
1) approximately 90% of receiving a diagnosis abort
2) Over half of parents with a child find out about the diagnosis after birth (largely due to a lack of detection during screenings), yet Skotko studies indicate a vast majority of these families and individuals are very happy
3) Vanderbilt population-based studies support Skotko’s findings with lower abortion rates (no inherent bias in this result)
How do we help people make more informed choices…..the choice they would make with 20/20 hindsight?
durlar
The largest information gap is any evidence based studies that demonstrate any medical benefit to a child with Down syndrome that relies on a diagnosis before birth. There aren’t any that I know off. It is a test to find children with Down syndrome in-utero to stop them being born.
Ask the testers for their proof that there is any medical benefit to the child with Down syndrome.
I wouldn’t put Rebecca, myself or my family in a situation of being near a representative of a company that seeks to find children like my daughter to stop them being amongst us. I choose to walk with the humane.
Mike
I don’t believe these companies have a personal dislike of folks with Ds or evena preference on termination. If their tests increased in volume because parents wanted to prepare with appropriate medical care, they would be thrilled with that as well.
They are not NAZIs, they are business people looking to make a buck. The more they are educated, the less tney can claim ignorance. The more bad publicity, the more they will change. It comes down to dollars for them, not opinions or emotions. We just need to change their calculus.
Off course they have a bias against people with Down syndrome. That’s the whole point of the test, to stop them being born. They try to dissolve themselves from any consequences of their own actions. They are complicate in providing the means to harm a group of humanity because of their genetic difference. Anyone with moral fibre cannot separate an act made consciously with a harmful action, so they have that in common with those tried at Nuremberg for the very same thing.
Mike –
A bias implies an inherent preference. If any of these testing companies believed they could triple their profits by encouraging more children with DS to be born, do you think they would not swap sides? Clearly they would – their investors would demand it. This is no different than the company that is adding high-fructose corn syrup to your food or using potentially harmful pesticides to increase crop yields. They don’t hate humanity; they are just exploiting technology to improve their profits (as immoral as many of us feel it is).
You will never convince a profit engine to change its course by arguing morality or emotions. You need to understand their motives and speak their language – how does their current behavior impact their profitability? When their current strategy becomes detrimental to profits they will be more open to change. Having genetic counselors see the other side of the story certainly could start to have just that impact. Good for Mark to tee-off the discussion.
“A bias implies an inherent preference. ”
Exactly, and as their is no benefit to the child, the implied preference is Down syndrome selective abortion. No other section of society is targeted like this.
How would the tests encourage more people with DS be born? It’s whole premise is that they are less worthy and therefore shouldn’t be born. And that’s their market. Screening and diagnostic testing is almost always used for selective abortion.
My blog here exposes all the smoke and mirrors behind this. We have basically been sold a big lie and NIPS/NIPT is now being sold as a good news story, when it is the opposite.
http://www.savingdowns.com/genetic-expert-diana-bianchi-misrepresents-new-eugenic-test-for-down-syndrome/
No other community would allow itself to be treated like this by any business. Just imagine marketing a prenatal genetic test for homosexuality.
But if Mark can limit the damage, then that is a great thing too.