Ethicist Ainsley Newson, writing in the [UK] Times, reacts to the news of the impending availability of a test that can detect Down syndrome from the blood of a pregnant woman:

Fetal DNA testing can be done ethically, she writes, provided that pregnant women are provided with high-quality information and are made aware that testing is optional. Among other things, women need to know that Down syndrome is “no longer a fatal disease,” and has a wide spectrum of abilities and physical characteristics.

We must also face the inevitable question of whether this testing puts us on a path towards eugenics -– literally meaning ‘well born’.

But this test is no different to any other in pregnancy: no one will force a woman to have it and there is no state-imposed ideal of perfection. Nevertheless, disability rights activists have a point when they argue that it is hard to select against a baby with Down’s without selecting against Down’s as well.

We need to remember that testing in pregnancy can never guarantee a healthy baby. But for many women the ability to exercise a considered choice is important and this must be protected.

Dr Newson lectures in biomedical ethics at the University of Bristol.

(University of Bristol photo)

From the Chronicle of Higher Education (subscription required), an article by Lila Guterman about prenatal screening for thalassemia on the island of Cyprus.

Cyprus has a high rate of thalassemia, an inherited blood disease, and people there are required to get tested before marriage to find out whether they carry the gene. Prenatal genetic screening is voluntary, but the state pays for abortions when thalassemia is diagnosed.

Even though the Greek Orthodox Church in Cyprus views abortion as a sin, it seems most people are taking that path. Without the screening program, approximately 70 babies would be born with thalassemia each year — one in every 158 births on the island. But no more than one or two such babies have been born in any year since the mid-1980s.

Ruth Schwartz Cowan, a professor of the history and sociology of science at the University of Pennsylvania, has worked to document how and why Cypriots came to adopt and support the screening program. (Earlier post here.) After dozens of interviews on both sides of the island, she came to realize that people in every sector of society had strong reasons to consider the program ethical.

Some Western Europeans and Americans, however, have voiced doubts. They wonder whether reducing the number of people born with the disease will undermine medical care for existing patients. Others worry that the program sits on a slippery slope leading to screening programs for less-deadly diseases.

But the success on Cyprus proves those concerns are hollow, contends Ms. Cowan.

From the New York Times:

Michael Winerip tracks the emotional, ethical and scientific journey of a New York-area woman as she wrestles with the question of whether to have another child.

Michael Winerip first wrote about Jordana Holavach for the New York Times Magazine in 1998, when he documented her efforts with then-husband Richard Sontag to push for so-called “gene therapy” for their son. Jacob, now 12, has a rare genetic neurological disorder called Canavan disease, which was not cured by the experimental procedure his parents succeeded in arranging for him. He requires constant care, uses a wheelchair and is not able to speak.

Winerip’s 1998 article noted that the pair also filed a “wrongful birth” lawsuit against doctors she had used while pregnant with Jacob, claiming that she would have had an abortion had she known about his condition. Jordana and Richard divorced shortly after the story appeared

In this piece, Ms. Holavach is deciding whether to have a child with Gareth Holavach, whom she married after her divorce from Mr. Sontag. For years Ms. Holavach was fearful of tempting fate by conceiving a second time, and worried that having another child would be a selfish distraction and a betrayal of Jacob. Recently, after undergoing extensive prenatal screening and testing, she delivered a baby girl who does not share the disease.

“Gareth said, ‘What if it’s Down syndrome?’ ” she recalls. “I said, ‘I’d abort.’ He said, ‘Why would you do that?’ He’d seen Down syndrome children who’d functioned well. I said there are no guarantees. I’d seen DS kids who spent their lives in and out of hospitals.”

Mr. Holovach didn’t push it, but said if they had found Down syndrome, he would have opposed an abortion.

It didn’t come to that. All the tests came back normal.

There are some obvious omissions here:

• Winerip doesn’t attempt to document the apparent failure of the gene therapy effort that was the focus of his earlier article;
• He doesn’t disclose the outcome of the wrongful birth lawsuit;
• He doesn’t mention that Jacob’s father, Richard Sontag, is the brother of New York Times reporter Deborah Sontag; and
• He doesn’t question Ms. Holavach’s misrepresentation of people with Down syndrome as spending their lives “in and out of hospitals”.

And then there’s the stigmatizing phrase “confined to a wheelchair,” used in both the story and the slideshow. How difficult would it have been for the New York Times to use stereotype-free language?

“In none of the endless presidential candidates’ debates has there been a meaningful discussion of the rights of disabled Americans,” says columnist Nat Hentoff in a column in the Sacramento Bee.

Hentoff takes Barack Obama to task for his recent statement of regret at having voted with the Senate to ask the federal courts to review the case of Terri Schiavo. By making the remark, Hentoff says,

Obama casually and ignorantly revealed his misunderstanding of the basic issue in the highly visible and still-resonating official death sentence of a disabled woman.

Hentoff says Obama failed to understand the basic message of 29 major disability-rights organizations on the case: that this was not a right-to-die case, but a case about a woman’s right to continue living.

Says Hentoff:

[Obama] should be proud of the Senate vote he now recants — and learn a lot more about the disabled.

Lucy Hunter’s tall frame is due to a genetic disorder. Yet she refused screening for her sons, who both now have the condition. She explains why she has no regrets

A first-person piece from the [UK] Independent:

… After genetic counseling, I considered the options. Although a prenatal test for Marfan’s exists, the idea of aborting my own child because he is, well, like me, was absolutely abhorrent. I looked into the more palatable idea of having a “designer” embryo implanted using IVF. Then I decided to take my chances on nature.

I have never regretted my decision, despite the guilt when I realised that Rufus, and Oisín, now four, had both been affected.
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From the [UK] Daily Mail:

British opposition leader David Cameron has risked angering hardline anti-abortion campaigners by saying he will vote to continue to allow abortions at virtually full term when a minor disability is diagnosed in utero. Cameron has a son with a disability.

… Members of Parliament are expected to vote on a proposal to change the rule that allows abortions as late as 39 weeks if the unborn child is diagnosed with a disability. But Mr Cameron said: “I won’t be supporting that. The current law should remain.”

… The issues raised by the legislation are sensitive ones for Mr Cameron because his five-year-old son Ivan was born with a severe form of cerebral palsy and epilepsy and needs 24-hour care.

A full-term pregnancy is approximately 40 weeks.

The story drew many comments, including this one:

Both Cameron and Brown have children with disability and yet both support abortion up to birth for disability. Is this their real position or are they simply trying to curry voters’ favor because they believe that most people in this country see disabled people as an encumbrance?
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UNC Prof. Albert Harris recently told his biology class that older women should terminate pregnancies if Down syndrome is diagnosed.

Two op-eds from the Charlotte [North Carolina] News & Observer:

Out of touch on Down syndrome

Ellen Russell, who recently celebrated her 29-year-old daughter Emily’s marriage (photo at left), questions Prof. Harris’ assertion that a child with Down syndrome had “ruined” the lives of a family of his acquaintance. She says such a statement misses the lesson of the last thirty-plus years of advocacy by families of people with intellectual disabilities.

Perhaps that family could never access what it needed in the educational, social, day-care, employment or medical systems. Perhaps it didn’t have the encouragement of family, neighbors and friends. It is impossible for me to accept that it was the child who ruined their lives. I can give a hundred personal examples of families whose lives have flourished and benefited from the experience of having a child with Down syndrome.
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