Gary Bauer and Daniel Allott write in Politico.com that Trig Palin has become a lightning rod for criticism against his mother, Sarah Palin.

Bauer (no relation) and Allott say the “hateful response” that greeted Palin on the campaign trail last year carried “eugenic overtones” and reflected a “broader societal bias against disability.” Trig Palin has Down syndrome. An excerpt:

Palin is controversial, in part, because America is divided over disability. We’ve established laws and institutions that protect people with disabilities. But we also do everything we can to make sure they don’t see the light of day.

Trig is a reminder of our fierce ambivalence over disability. Every mention of his name is a pinprick to our conscience. Every photo of mother and son is a reminder of concepts – vulnerability, dependency and suffering – our culture no longer tolerates, as well as virtues, such as humility, dignity and self-sacrifice, it no longer extols.

Trig is also a reminder of an inescapable truth: Disability is an inherent part of the human condition. At a time of deep cultural divisions, 1-year-old Trig Palin represents the deepest division of all, between a culture that increasingly sees genetic perfection as an entitlement and a culture still rooted in the belief that human beings are defined not by their capabilities but, instead, by the very fact of their humanity.

Former presidential candidate Gary Bauer is president of American Values, a conservative non-profit. Daniel Allott is a senior writer at American Values.

Can identify any of 15,000 known genetic disorders, researchers say

From the [UK] Times, [UK] Telegraph, BBC News:

A universal test to check embryos for almost any genetic condition could be available in the UK within a year, British researchers say. Clinical trials are expected to start within months.

Researchers say the £2,500 procedure, called karyomapping, can be used to quickly identify embryos with inherited illnesses like cystic fibrosis and spinal muscular atrophy, among an estimated 15,000 known genetic disorders. They believe it has the potential to eventually eradicate some inherited conditions like Huntington’s Disease, and to look for genetic causes of autism.

Critics say the procedure sparks fears that parents will selectively terminate fetuses with non-serious conditions, but scientists say its use would be heavily regulated in Britain and limited to serious diseases. In theory, the process could be used to select for particular characteristics like height and hair color.

“We’re not mad Frankensteins working away in our labs creating designer babies. We can only look for major disorders,” said Prof. Tony Rutherford, chairman of the British Fertility Centre.

(more…)

Two 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.

Writing in the American Spectator, Daniel Allott assesses the potential impact of Sequenom, a California company that has promised to produce an earlier, more reliable prenatal test for Down syndrome. The introduction of Sequenom’s test to the marketplace has been delayed as a result of the alleged “mishandling” of data by its employees.

…Recent developments may delay the impending epidemic of disability abortions caused by enhanced genetic testing …(but) none of this means unborn babies with disabilities will be granted an extended reprieve. Sequenom says it wants to have a validated test by the fourth quarter of 2009 and new tests launched by late 2010 or early 2011. And at least three other companies are developing similar genetic tests and hope to have them on the market by the end of the year.

A mother’s womb is already the most hazardous place on earth for a baby. It won’t be long before it becomes a death chamber for almost all babies with disabilities.

‘Doctors who perform procedures provide little data but underscore reasoning’

Washington Post staff writer Rob Stein interviews Susan Fitzgerald, a patient of George Tiller’s who had an abortion “near the end of her pregnancy” after she learned her fetus had “a rare condition that left his bones so brittle he would live less than a day.”

Stories like Fitzgerald’s have surfaced in the wake of Tiller’s death, focusing attention on late-term abortions of fetuses with abnormalities. Still, Stein writes, there is no firm data on the number of terminations involved, or the number of providers who perform them. An official at the Guttmacher Institute estimated  that as many as 2,400 abortions were performed after 24 weeks in the United States in 2001.

Abortion rights activists argue that late-term procedures are performed only when absolutely necessary — often when devastating abnormalities in the fetus or life-threatening problems in the woman are discovered … Abortion opponents condemn the procedures, regardless of the circumstances.

… Under Kansas law, an abortion can be performed after a fetus is viable only if the doctor performing the procedure and an independent physician agree that the woman’s life is at risk or that continuing the pregnancy would cause “substantial and irreversible impairment of a major bodily function.”

(more…)

From CBC News:

As Quebec’s health minister considers a proposal for universal prenatal testing for Down syndrome, people with the condition are challenging him to meet and talk with them before making a decision. They say universal testing would be discriminatory.

“There wouldn’t be any more people like me,” said Maude Richard, speaking in French.

According to Quebec’s Health and Welfare Commission, most people in the province favor making amniocentesis available to all pregnant women regardless of age.

A teary-eyed Roselyne Chevrette told CBC News she is proud that her mother chose to have her.

She said that telling parents they can screen for Down syndrome sends the wrong message about people like her, and creates even more prejudice.

‘Dr. Tiller understood women’s suffering’

Writing in the Toronto Star, columnist Antonia Zerbisias says George Tiller performed an essential service for women who are diagnosed with grave fetal abnormalities. His murderer, she says, was part of a “huge misogynist and Christian fundamentalist conspiracy” that seeks to control women.  An excerpt:

Picture going for your 20-week ultrasound, all excited to learn if you’re going to paint the nursery pink or blue, and a grim-faced technician offers no congratulations.

… I know I would not want to rattle around for months with my dead dreams weighing heavily inside me, especially if continuing to carry them would destroy my chance of having children.

Would you?