Writing in the Archives of Disease in Childhood (subscription required for full text), Dr. Brian Skotko reports that the number of babies born with Down syndrome has been steadily decreasing around the world as prenatal testing and selective termination have become more widespread.

Skotko reports that a trend toward later childbearing in the United States would have been expected to cause a 34 percent increase in the number of babies born with Down syndrome between 1989 and 2005 in the absence of prenatal testing. Instead, there were 15 percent fewer such babies born, a decrease of 49 percent between expected and observed rates.

With new and more sophisticated prenatal tests expected soon, Skotko called on the medical community to address the ethical questions raised by medical technologies that allow nations to decide what forms of human genetic variation are valued. He urged the medical community to:

– Develop guidelines for delivering a diagnosis of Down syndrome;

– Assemble current and accurate information on Down syndrome, in collaboration with parent support organizations, to be distributed to prospective parents;

– Offer comprehensive training to professionals on how to deliver a non-directive prenatal diagnosis; and

– Develop curriculum to give medical, nursing and genetic counseling students a richer understanding of Down syndrome.

An excerpt:

… In its support for Down syndrome prenatal screening, has the American College of Obstetrics and Gynecology endorsed a climate in which disability discrimination could more easily flourish?

… The age is swiftly coming where not all possible technologic advances may bring welcomed change. Parents who have children with Down syndrome have already found much richness in life with an extra chromosome. Now is the time for the rest of us to discuss the ethics of our genetic futures.

Dr. Brian Skotko is a clinical genetics fellow at Children’s Hospital Boston. ADC is the journal of the Royal College of Paediatrics and Child Health. Press release from Children’s Hospital Boston here.

Full article available for purchase here.

Newsweek magazine profiles Ari Ne’eman, the 21-year-year-old founder of the nonprofit Autistic Self-Advocacy Network. Ne’eman is a master networker who wants to convince the world that autism is not a medical mystery that needs to be cured, but rather a type of “neurodiversity” that should be accepted by society.

Ne’eman, who has Asperger’s syndrome, is troubled by the ethical implications of genetic research into autism. He fears that a prenatal test for autism could lead to “eugenic elimination,” which would mean people like him might cease to exist. Autism is not a fatal condition, he says. Should people without the disorder be allowed to judge the quality of life of someone who has it?

“That is a message that the world doesn’t want us here,” says Ne’eman, “and it devalues our lives.”

The prospect of no more Ari Ne’emans — whether you agree with him or not — is haunting. Termination of fetuses with Down syndrome is routine today; given the fear that autism inspires in parents, why wouldn’t it follow? And what would our world be like without autism?

… One of Ne’eman’s latest efforts is a new public-service announcement called “No Myths,” which he helped create with the Dan Marino Foundation, a funder of autism research. In it, Ne’eman appears in a red sweater and tie along with others on the spectrum, including a man who speaks through a communication device. “Our futures have not been stolen,” Ne’eman says. “Our lives are not tragedies.” The message is clear: We stand before you. Don’t make us go away.

Related posts here and here.

(Photo of Ari Ne’eman from ‘No Myths’ PSA)

From the BBC:

Scientists are coming closer to developing a reliable prenatal test for autism, which would open the door to selective abortion as well as the possibility of a prenatal drug treatment to prevent the disorder.

Simon Baron-Cohen, director of the Autism Research Centre at Cambridge University, urges that society proceed cautiously and engage in a full public debate before any tests are made available. He worries that efforts to eradicate autism might in the process end up reducing the number of future great mathematicians. An excerpt:

Caution is needed before scientists embrace prenatal testing so that we do not inadvertently repeat the history of eugenics or inadvertently ‘cure’ not just autism but the associated talents that are not in need of treatment.

With audio of an interview/debate featuring Baron-Cohen and Joy Delhanty, professor of human genetics at the University College of London and director of the UCL Center for Pre-Implantation Genetic Diagnosis.

By Patricia E. Bauer

LOS ANGELES — A coalition of performing arts unions today announced the launch of a major disability rights campaign to increase visibility and employment opportunities for actors, broadcasters and performers with disabilities throughout the entertainment and news media.

At briefings in Los Angeles, New York and Washington, leaders of the Screen Actors Guild, the American Federation of Television and Radio Artists and the Actors’ Equity Association said the campaign would work to reverse a history of exclusion and bring the world’s largest minority into the media mainstream.

“There is an alarming absence of people with disabilities in the media.  We are virtually invisible,” said “CSI” regular Robert David Hall (above), who uses prosthetic legs as a result of an accident 30 years ago. Hall, who serves as chairman of the tri-union committee of performers with disabilities, told a news conference at SAG’s Los Angeles headquarters that he plays one of only three disabled characters in recurring television roles.

“Kids and adults with all kinds of disabilities need to see positive images of themselves, and the world at large needs to see PWDs (people with disabilities) as the intelligent, talented and passionate human beings that we are,” he said.

SAG president Alan Rosenberg drew parallels between this effort and campaigns for civil rights protections for racial and ethnic minorities, women, lesbian and gay people, and seniors.

“The time for change is now,” he said. “Discrimination has to be challenged loudly, with a global effort to educate the public to the lack of inclusion and universal access in the entertainment industry.”

(more…)

‘Parents of Special-Needs Children Divided Over Palin’s Promise to Help’ — New York Times

Some parents of children with disabilities are enthusiastic over Gov. Palin’s pledge of support, but advocacy on behalf of the disability community has not been “a centerpiece of Ms. Palin’s 20-months in office or any of her campaigns for office.”

“I never heard Governor Palin say as governor, ‘You have an advocate in Juneau,’ ” said Sonja Kerr, a lawyer specializing in disability law in Anchorage.

A spokeswoman for Palin would not elaborate on her decision to give disability issues prominent placement in her acceptance speech.

John McCain has voted against increasing federal special education funding, and also opposes legislation that would help states move people with disabilities from institutions into community living arrangements. Both Sen. Obama and Sen. McCain are among sponsors of pending legislation to update and strengthen the Americans with Disabities Act.

Ms. Palin’s effort to rally parents of children with disabilities has also prompted reaction among those who fear that her idea of advocacy might really mean preventing abortions of fetuses with Down syndrome, rather than lobbying for the early medical and developmental assistance that is so crucial to their children’s well-being.

(New York Times photo of Nancy Iannone and daugher Gabriella. Nancy is a contributor to the book Gifts, and comments regularly on these pages.)

~~~~~~~~~

Candidacy is a chance to shed light — Beverly Beckham, in the Boston Globe, writes another in an occasional series of columns offering glimpses of her lively and inquisitive granddaughter. She describes five-year-old Lucy as she runs, bounces and skips through her life, and sits on the floor reading “book after book.” Lucy has Down syndrome. Beckham says it would be valuable if Palin’s candidacy …

… illuminated the facts about DS. Because without public education, her 4 1/2-month-old baby boy may see his whole life defined by what he can’t do instead of by what he can do. He will be pigeonholed and pitied and underestimated. And he will make people turn to their own offspring with a sigh and a whispered prayer of thanksgiving, “There but for the grace of God, go I.”

Unless the world learns better.

(more…)

Renate Lindeman, writing in the [Halifax, Nova Scotia] Chronicle Herald, says women who undergo prenatal screening and testing for Down syndrome should first be provided with accurate information about the happy, healthy lives that are increasingly being led by people with an extra chromosome.

In Holland, Lindeman says, a government-sponsored program to provide balanced information about genetic conditions to healthcare providers and the general public has led about 50 percent of pregnant women there to decline prenatal screening. But such an effort in Canada would be unpopular with businesses seeking to capture a share of a multi-billion dollar market. An excerpt:

While medical biotechnology increasingly impacts our lives in legal, economic and moral ways, the Canadian government is doing little, if anything, to inform or engage the public in policy development. The lack of interest and funding to ensure proper counselling and real, balanced information about Down syndrome for women, before they are offered screening, raises some serious ethical questions.

When I look at my daughters, both living with Down’s, I don’t see the genetically flawed retards, with stunted growth, 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, every day, the most important lesson in life: to feel.

If we let profits be our only guidance in developing policies, will we end up with the Canada we want?

Renate Lindeman is co-founder of Nova Scotia Down Syndrome Society and spokesperson for Down Syndrome Belongs. See earlier post about their video, “Be.”

Writing in the Washington Post, novelist Ann Bauer (no relation) says she’s jealous of parents whose adult children have Down syndrome.

Bauer, whose son has autism, says family members of people with Down syndrome have “figured out a cohesive, workable system of support,” while the autism community is divided and disorganized.

She wishes the autism community could take a lesson in cooperation from families of people with Down syndrome, but fears that high rates of selective termination will ensure that “the power of their parent group is shrinking, as is the world’s mosaic of human form.”

Someone has to talk to those wise parents before they die out, or I fear our children with autism will continue to wander through a world where they never fit.