Columnist Alasdair Palmer writes in the [UK] Telegraph that prejudice persists against people with Down syndrome, even as medical and educational advances have vastly improved their quality of life in recent decades.

Palmer says people with Down syndrome used to be routinely institutionalized, and  “written off as hopelessly stupid and as incapable of benefiting from any form of education.” Now, thanks to the availability of education and health care, he says, thousands of people with Down syndrome in the UK are leading satisfying and productive lives within their communities.

Palmer favors allowing abortion as an option but says prospective parents must be given accurate, up-to-date information about Down syndrome as they consider prenatal testing. “What is wrong is rather that the process includes nothing at all which suggests that having a child with Down’s need not be a disaster; it can be a rewarding experience,” he says.

The column was timed to coincide with the 50th anniversary of the discovery of the cause of Down Syndrome by French geneticist Jerome Lejeune.

See also: Hope for Down syndrome — Times of India. Experts say 98 percent of children with Down syndrome in India have no access to education.

Would it be a good thing if new, more accurate blood tests could help bring about the elimination of all people with Down syndrome from the population? In answer to that question, bioethicist Art Caplan of the University of Pennsylvania tells Good Day Philadelphia on Fox 29 News he’s not sure. A partial transcript:

Caplan: A lot of people would say look, Down syndrome — it’s a disability but the child doesn’t suffer. Down syndrome children are normally pretty happy, loving, caring. And on the other hand, people are gonna say wait a minute. I should have the right to get a test, and if I do or don’t want to have a child with a disability, that’s up to me.

… I think what we’re going to have to insist upon is good counseling. if you just take the test and someone says oh, you have a child who’s going to be disabled, you’re not hearing, you know, Down’s kids may be something that you can live with, they are great to have in the family.

So I think it’s important to have somebody counsel you in the test. And what I’m worried about is that we don’t mandate counseling to go with testing, just to give the full picture …

Host John Anderson: Now there some out there who say okay, let’s do the test because if this works, we can get the Down syndrome population down to practically nothing. And we’re all for a healthier lifestyle. But is that realistic — to think that we would eliminate this type of population?

Caplan: I’m not sure it’s realistic. I’m not sure it’s good.

See video here.

Comments, readers? What’s your take?

By Patricia E. Bauer

When more than 300 Down syndrome advocates from 35 states gathered at the U.S. Capitol last week, their stated mission was to seek federal funds to help spread accurate information about prenatally diagnosed disabilities.

But for many the goal was much more personal: To put a human face on a condition they feel is misunderstood and even stigmatized by the general public.

Recent advances in medical technology, coupled with strong business incentives, have been driving a broad public perception that Down syndrome is largely preventable through prenatal diagnosis and selective termination.

These advocates, from 85 local groups and representing some 400,000 Americans with the condition, hoped to leave their elected representatives with a different impression. They want legislators to see their loved ones with Down syndrome as valuable, worthwhile people who are respected and cherished members of happy families.

“We want them to know that we are here, and we are striving to make sure that our kids are part of our community — not hidden away like in the past,” said Theresa Grant, a mom from Reno, Nevada, whose 11-year-old son Elliott has Down syndrome. “They are making strides and they are succeeding in school.”

“We can stand up for ourselves,” said Lydia Orso, a young woman with Down syndrome from St. Louis, at left with Rep. Patrick Kennedy (D-RI).  “We can be advocates and have a voice.”

Kennedy Brownback Bill

Representatives of Down Syndrome Affiliates in Action (DSAIA) called on Congress to allocate $25 million over five years to implement the Prenatally and Postnatally Diagnosed Conditions Awareness Act, known as the Kennedy Brownback Bill.

The bipartisan measure calls for providing accurate, up-to-date information and support for parents who receive a diagnosis of Down syndrome or other disabilities such as spina bifida or cystic fibrosis either prenatally or up to a year after the birth of their child. It passed passed both the House and Senate without dissent and was signed into law last fall.

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Procedure can save lives of kids with disabilities, he says

Writing in the Los Angeles Times, Allen Goldberg says clinics that offer to screen embryos for eye color and hair color risk poisoning public opinion against a procedure that can be life-saving for some children with genetic disease.

Goldberg’s son, Henry, had Fanconi anemia, a rare and fatal genetic disease for which the only hope is a bone marrow transplant from a genetically matched sibling. Goldberg and his wife attempted to conceive a donor sibling for Henry through the use of preimplantation genetic diagnosis, the same procedure that is now being marketed to create designer babies. An excerpt:

Henry was among the most optimistic, wise and courageous people I have ever met. We felt a great responsibility to do everything in our power to save his life. In the end, that wasn’t possible. But our efforts contributed to scientific knowledge, and for that we are grateful. Abusing that hard-won knowledge to capriciously choose hair color, eye color and other cosmetic traits in a baby is wrong and repugnant.

Writing in the Salt Lake Tribune, Linda Smith says most women  who consider abortion do so because they worry about whether they can provide for a child.

Smith argues that government could assuage those fears, especially among prospective parents of children with disabilities, by supporting  programs like Medicaid, SSI, job coaching, education and housing. An excerpt:

In these fiscally insecure times, the idea that we should impose across-the-board cuts on all programs raises serious concerns about our moral fiber. Instead, we should examine our priorities and not abandon the weakest. We should fund investments in the future. This is an opportunity to let the public know that Utah invests in the future for its children and cares for the neediest.

Linda Smith is a professor at the S.J. Quinney College of Law at the University of Utah.

From Nature News (updates from the scientific journal Nature):

A study by Simon Baron-Cohen linking autism with high fetal testosterone levels has prompted media reports anticipating prenatal tests for autism. But researchers in the field urge caution, both about the significance of Simon-Cohen’s findings and about the case for prenatal screening for autism.

Scientists also express concern that the British media has misinterpreted Baron-Cohen’s data.

[UK] Guardian columnist Marcel Berlin says he is puzzled by Simon Baron-Cohen’s call for an ethical debate about the development of prenatal tests for autism, since prenatal tests for Down syndrome have been used for many years. He wonders why autism should be treated differently from other conditions.

An excerpt:

What I can not accept is the argument put forward on behalf of autism alone, and no other condition — that among those autistic children not born, because their mothers had the test and decided to terminate, there might be brilliant autistic savants who would make an important contribution to society.

… If we take up Baron-Cohen’s call for a debate, we will have to decide between three elements: the autistic person’s predicted quality of life (though the test may not be that precise); the feelings of the parents who may suffer far more than their child; and the view of society as to its diminished diversity if we continue to prevent the birth of the imperfect. The last should be the least listened to.

Earlier posts here and here.

See also: The Big Question: Should mothers be offered screening for autism, and what issues would it raise? - The [UK] Independent

(Photo from the Guardian)