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Archive for the ‘ethics’ Category

Discredited anti-vaccine doctor Wakefield quits autism center

Thursday, February 18th, 2010

From the [UK] Times, [UK] Guardian, Austin [TX] American-Statesman (blog):

Andrew Wakefield, the discredited British doctor whose research triggered a wave of opposition to childhood vaccines, has resigned unexpectedly from the autism center he founded in Austin, Texas.

The announcement comes only a few weeks after a British regulatory agency ruled that Wakefield acted dishonestly and irresponsibly in research that led to the 1998 publication of a paper which claimed a link between autism and the vaccination for measles, mumps and rubella.

Wakefield is now defending his medical license in England, and does not have a license to practice medicine in the United States. In a statement, representatives of the Thoughtful House Center for Children said Wakefield had left his post voluntarily to avoid allowing the controversy to overshadow the center’s work.

Related posts here.

Editorial: Lancet waited too long to retract autism-vaccine study

Wednesday, February 3rd, 2010

The editorial board of the Wall Street Journal says the Lancet’s retraction of Andrew Wakefield’s 1998 vaccine study comes “about 12 years too late.” The research paper, which purported to link vaccines with autism, launched a global vaccine scare, caused vaccination rates to plummet, and triggered waves of measles outbreaks.

Even as overwhelming scientific evidence showed vaccines to be safe, the editors say, the respected research journal turned aside questions about the credibility of Wakefield’s study. It was only after Britain’s medical regulator confirmed that Wakefield had acted “dishonestly and irresponsibly” that the Lancet said it “fully retract[s] this paper from the published record.”

The Lancet episode shows how even reputable publications can become conduits for junk science when political causes run hot. Especially amid the scandal over politically motivated climate science, the public needs professional journals to be scrupulous about their standards and honest about the science.

‘A future without Down syndrome?’

Monday, January 11th, 2010

Dana Goldstein, an associate editor at the Daily Beast, says improved prenatal testing could well reduce the number of secular, educated families who have children with Down syndrome.

She interviews parents of kids with DS, who say they hope that doesn’t happen. An excerpt:

Rachel Adams [a professor of English and American studies at Columbia University whose son has Down syndrome] describes herself as a pro-choice feminist, a woman who wouldn’t want to deny any other woman the choice of whether to carry a pregnancy to term. But she’s also committed to giving expectant parents a more hopeful view of what it’s like to be a mother of a child with Down syndrome. This spring, she and a friend will be giving talks to genetic counselors about how they can more sensitively deliver the news that a fetus has Down syndrome, without steering couples toward termination.

Adams sees a contradiction in our society’s increasingly friendly bearing toward disabled people and its obsession with developing ever more revealing genetic tests. “Now that I have Henry, I go from such optimism to such extreme worry,” she says. “There are ethicists who ask, ‘At what cost to humanity is the elimination of whole categories of people?’ You’re living with these contradictions—wanting women to have complete reproductive freedom but wishing the choices they had were conveyed to them in a different way.”

A world with no more Down syndrome?

Friday, September 18th, 2009

In The Checkup blog for the Washington Post, Jennifer LaRue Huget cites a recent article by Dr. Brian Skotko and asks, “What would the world be like if there were no more people with Down syndrome?”

Huget says Skotko’s observations in the Archives of Disease in Childhood resonate beyond just one genetic condition. Skotko explored the impact of prenatal screening and selective termination on the number of babies born with Down syndrome, and called for a public conversation about the ethics of selective termination.

Commenters to the Post site were divided, with some writing that their children with Down syndrome had enriched their lives and others defending the right of women to selectively terminate without outside influence or intervention.

MA legislators push broader insurance coverage for disabilities

Monday, July 27th, 2009

From the Boston Globe:

The Massachusetts legislature is considering more than 70 bills that could mandate medical insurance coverage for people with disabilities and potentially raise healthcare costs.

Among the proposals are bills that would mandate coverage for hearing aids, treatments to fix cleft palates, and wigs for cancer patients.

The proposals to require coverage of everything from aquatherapy to vitamins for certain patients raise broader questions about where legislators should draw the line — and whether they should be the ones making delicate decisions that require balancing cost with patient needs.

Some ethicists and economists suggest that such complex and high-stakes choices should instead be made by panels of healthcare specialists who are appointed by lawmakers, as is done in many other developed countries.

Two prenatal Down syndrome diagnoses, two perspectives

Monday, July 20th, 2009

From the [UK] Sunday Times:

Two mothers share their perspectives on deciding whether or not to terminate a pregnancy after receiving a Down syndrome diagnosis:

Helena Campbell says she could not bear the thought of bringing a child into the world to suffer. She says she knew right away that terminating her pregnancy was the right thing to do.

The older children were devastated that we had lost the baby. But part of my thinking had been that I wasn’t going to be here forever, and somebody in the future would have to be responsible for this disabled child. I didn’t think it was fair to put that pressure on the other children.

… My son wasn’t supposed to be here; that’s what I believe.

Sal Hamlyn writes that she felt pushed to terminate after her son was diagnosed with Down syndrome, but she already felt he was part of her family.

“I can’t pretend the weeks leading up to his birth were easy. There were mixed emotions — but we always had hope. We had tremendous support from family and friends, and from the Down’s Syndrome Association.

… “I thought what happened to us was the end of the world — but it was the start of a whole new one. Life’s never dull with Isaac.”

Oregon couple seeks $14 million in ‘wrongful birth’ lawsuit

Saturday, June 13th, 2009

Doctors failed to diagnose daughter’s Down syndrome prenatally, they say

From the [Portland] Oregonian:

A Portland couple whose 2-year-old daughter was born with Down syndrome is suing their doctor for more than $14 million to cover the cost of raising her and providing education, medical care, and speech and physical therapy.

Deborah and Ariel Levy said they would have gotten an abortion if they had known that their daughter would have the condition.

The Levys declined to be interviewed. Their attorney, David K. Miller, said the toddler is as dear to them as their two older children but they fear being perceived as “heartless.”

…  “They feel very strongly that what happened to them was wrong,” Miller said. “They were given incorrect information, and their lives have changed because of it.”

Ethicist Arthur Caplan said fewer than 10 such suits are filed in the U.S. each year. Some states have banned them.

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