Simon Crompton, writing in the [UK] Times, says the recent news about the increase in babies with Down syndrome in the UK should prompt an effort to assure that all people with disabilities have the supports necessary to help them live a good life. He praises charities that have worked for positive attitudes toward people with disabilities. An excerpt:

… With giddying amounts being spent on research into stem cell and other therapies and new diagnostic tests for congenital conditions, the Down’s story is a reminder that sometimes we can get too carried away with the science of prevention, forgetting that some conditions are only severely disabling because we’re not investing enough in supporting families affected by them.

Sometimes science isn’t everything. In the case of Down’s syndrome, if our attitudes changed and our support services were up to scratch, much of it would be simply unnecessary.

Columnist Dominic Lawson, writing in the [UK] Independent, says the medical profession is biased in favor of ‘eugenic termination’ of fetuses with Down syndrome. Lawson’s 13-year-old daughter Domenica has Down syndrome. An excerpt:

[The anti-Down syndrome bias of the medical profession] is not based on a realistic and up-to-date assessment of the possibilities open to those with Down Syndrome, still less of the happiness which such people can and do bring to families and even communities as a whole: it is a function of the fact –- which is undeniable –- that people with Down Syndrome are likely to cost the NHS (National Health Service) more in subsequent medical treatment than a child without any disabilities.

… Yes, there are arguments about the quality of life a disabled child can have. The truth, however, is that a congenitally disabled person knows no other existence than that which he or she has: it is others who might deem their lives to be inadequate, not they. When I look at Domenica I see someone with a vast joy in just being alive, and I am indescribably happy that she is.

Minette Marrin, writing in the [UK] Sunday Times, objects to the word “eugenics” as it has been used recently in the media by advocates for people with Down syndrome. She says the word unfairly disparages people who think it is right to abort a fetus with Down syndrome, linking them to Nazis. An excerpt:

I am convinced that it is a grave misfortune for babies to be born with Down’s or any comparably serious syndrome. It’s a misfortune for their parents and their siblings as well. Sad observations over decades have convinced me: a damaged baby is a damaged family, even now.

I resent the moral condescension of those who claim that people who think like me are not only wrong but hateful…

… nearly all [women with a prenatal diagnosis of Down syndrome] choose abortion. Those who choose differently should understand they are choosing hardship, perhaps great hardship, for their child and for their other children. This has nothing to do with eugenics and everything to do with the painful complexity of moral choices.

Writing in the Canadian Medical Association Journal, Renate Lindeman says it’s time to take the issue of prenatal screening out of the abortion debate once and for all. Lindeman’s two daughters have Down syndrome. She says pregnant women are not receiving unbiased, balanced and complete information about Down syndrome, and so are not making fully informed choices.

Lindeman would like to see complete information made available before couples are even asked whether they wish to screen. An excerpt:

Singling out a condition by offering routine screening and enabling selective abortion sends a strong value judgment about potential quality of life. Trying to predict the future based solely on their genes opens the door to discrimination, anxiety, fears and underestimating social and environmental factors in maintaining health. Progress that was made over many generations, in terms of inclusion and equal rights, could be lost in less than one.

… At the end of the day, when I look at my daughters, April and Hazel, both living with Down syndrome, I don’t see the genetically flawed children that prenatal screening is trying to eliminate. I see kind-hearted, happy children who are giants in loving and living, who enrich our human genetic diversity and who teach me and everyone they meet what it is to truly feel.

See related article.

Lindeman is a spokesperson for “Down Syndrome Belongs” of Dartmouth, Nova Scotia.

But there aren’t enough doctors to provide counseling to pregnant women

From the Montreal Gazette:

An article in the Canadian Medical Association Journal warns doctors that they may face more wrongful birth lawsuits if they don’t offer prenatal screening for chromosomal abnormalities to all pregnant women.

But one of the article’s authors says Canada needs to drastically increase the number of doctors who can provide counseling to go along with the prenatal tests. Guidelines issued by Canada’s professional obstetrical and genetics associations last year recommended that pregnant women of all ages be offered prenatal screening for genetic anomalies.

“We need to have strategies in place to rapidly double or triple the number of doctors per population in Canada, because we should be doing this counselling because the guidelines dictate it must be done and doctors have to be given the time to do it,” said Jeff Nisker, one of the study’s authors.  “And the only way for that to happen is for there to be more doctors taking care of pregnant women.”

“This is not a short conversation. This is a very, very long conversation,” he said. Nisker is a professor of obstetrics, gynecology and oncology at the University of Western Ontario.

Among the article’s “key points”:

• The new guidelines emphasize obligations of respect for reproductive autonomy and respect for disabled people; however, tension exists between these obligations because clinicians may be legally liable if prenatal screening is not offered. Research into the implications of the guidelines on Canadian clinicians, pregnant woman, disabled people and the general public is required.
• Canadian professional bodies should work together to provide information to clinicians about informed consent, nondirective counselling and sensitivity to both people with disabilities and pregnant women.
• Professional societies should offer courses that include a discussion of the new standards and resulting counselling obligations.

Writing in National Review Online, editor Kathryn Jean Lopez assembles some of the nastier things that have been written lately about Trig Palin (like he must be so glad he wasn’t aborted). She concludes that Trig’s public presence is bringing repressed post-abortion pain into the open, prompting widespread hostility.

Lopez says that getting to know Trig has been good for America. An excerpt:

Before this election, most Americans did not know that upwards of 90 percent of children diagnosed with Down Syndrome are never born. Now we know. Now we can offer more support to our friends and neighbors living with this challenge. Now we can do something to make sure we let people know they have our support before they eliminate a child who can bring them great joy, amidst the challenge.

Mind you, if we elect a president tomorrow who went out of his way in Illinois to oppose protecting newborns from infanticide — what an outrage it would be to give newborns the same right as older infants, then-State Senator Obama said — we will be taking a bit of a step backward, too, in the fight for a culture of life, though I do believe it will have been more out of ignorance than out of acceptance of that radical and barbaric position.

Or so I hope. And Palin, whatever happens tomorrow, has brought with her to the campaign trail a pleasant change — a witness and an awareness and a blessing. God bless her as she raises Trig, in or out of the vice president’s residence at the Naval Observatory in Washington, D.C.

From the Washington Post:

New prenatal tests employing “gene chips” are already in use, identifying more pregnancies with potential problems and raising concerns that test results will increase abortions, while confusing and needlessly alarming many couples.

Some say they “mark another step toward a society that seeks to weed out aberrations in the quest for the perfect child.”

Proponents say the tests can identify abnormal DNA more sensitively than those available previously, allowing parents to alleviate worries or learn about potentially devastating syndromes early enough to terminate the pregnancy or arrange postnatal care.

But critics say the tests have not been thoroughly validated and threaten to produce a flood of murky, misleading results that will subject emotionally vulnerable couples to unnecessary anxiety, perhaps prompting some to abort healthy pregnancies.

Some worry that the technique could be used to hunt for the rapidly growing list of genetic markers that merely signal an increased risk for cancer, diabetes, mental illness, obesity, addiction and other conditions later in life. Someday, similar tests could perhaps even vet fetuses for traits associated with beauty, personality or intelligence.

… Advocates for the disabled worry   (more…)