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Archive for the ‘genetics’ Category

Obit: Paul Steven Miller, law professor and disability advocate

Thursday, October 21st, 2010

From the New York Times:

After graduating at the top of his class at Harvard Law School in the 1980s, Paul Steven Miller was rejected by more than 40 law firms before he was able to find work. The reason: Miller was born with achondroplasia, a form of dwarfism. One hiring partner told him that clients would think the firm was running a “circus freak show” if they took him on.

Miller, who went on to become a law professor, advisor to presidents and leader in the disability rights movement, died Tuesday of cancer. He was 49, and was widely recognized as an expert on the intersection of disability law, employment discrimination and genetic science.

An excerpt from the New York Times obituary:

Drew Hansen, an adjunct lecturer who taught with Mr. Miller, said his colleague had long been concerned about the carrying out of the 1990 Americans With Disabilities Act. “He believed that judicial interpretations of the A.D.A. were more restrictive than they had been of civil rights laws because there was not a similarly visible mass social movement,” Mr. Hansen said.

In recent years, Mr. Miller focused on tensions between disability rights and genetic science. In a paper titled “Avoiding Genetic Genocide,” Mr. Miller criticized scientists for what he saw as their eagerness to use genetics to produce “perfect” humans.

“Good health is not the absence of a disability,” he wrote. “Scientists caught up in the excitement of genetic discovery can forget that life with a disability can still be a rich and fulfilling life.”

Earlier posts here.

See also: Miller presentation at Georgia State University College of Law: “Good Intentions and Eugenics: Avoiding Genetic Genocide.” With audio.


See also:

‘American Idol’ contestant builds awareness for Tourette’s

Friday, April 23rd, 2010

Freelancer Anne Miller, writing in the Washington Post, says ‘American Idol’ contestant Dave Pittman is part of of a rising movement of people with Tourette’s syndrome who are putting a public face on the disorder.

Pittman, a singer from Arkansas, performed a four-minute audition on national television earlier this year but failed to make it to the final rounds after he forgot some song lyrics. He has now embarked on a motivational speaking tour.

Among other people who have Tourette’s: Brad Cohen, a teacher who was featured in the TV movie “Front of the Class;” political cartoonist and author Jeff Koterba; New York City Council member Jumaane Williams; and Miller’s husband, Michael Davoli. An excerpt:

Now that we’re married, people with Tourette’s or parents of kids with Tourette’s sometimes put Michael on a bit of a pedestal: He got through school, he has a good job and he married. That’s probably the biggest concern of Tourette’s sufferers and their relatives: Will their life be normal?

At a recent public appearance, Koterba met a mother and her young daughter with Tourette’s. The woman asked Koterba if her daughter would have a normal life. It broke his heart, Koterba recalled. “No,” Koterba told the girl. “You’re going to have a great life. An amazing life. A creative, beautiful, wonderful life.”

See also:

(Fox photo from the Washington Post)

Court: Sperm bank can’t be sued under products liability law

Wednesday, April 7th, 2010

From Legal Intelligencer/www.law.com:

Ruling in the case of a girl who inherited Fragile X syndrome from sperm purchased through a sperm bank, a federal appeals court has concluded that the sperm bank cannot be sued for selling a defective product.

The decision by the 3rd U.S.Circuit Court of Appeals in Donovan V. Idant Laboratories said allowing such a claim under products liability law would be tantamount to recognizing a claim of “wrongful life.”

“Simply put, a cause of action brought on behalf of an infant seeking recovery for wrongful life demands a calculation of damages dependant upon a comparison between the Hobson’s choice of life in an impaired state and nonexistence,” [Judge Maryanne Trump] Barry wrote. “This comparison the law is not equipped to make.”

In court documents, Donna Donovan said she purchased sperm from Idant Laboratories in 1995 after being assured that its donors were routinely subjected to rigorous screening. Donovan’s daughter Brittany was born in 1996 and was subsequently diagnosed with Fragile X, a genetic mutation which is linked to intellectual impairment and autism spectrum disorders.

An initial decision by U.S. District Judge Thomas N. O’Neill Jr. had allowed the sperm bank to be sued under products liability law, saying that “the sale of sperm is considered a product and is subject to strict liability.”

Opinion: ‘Disability-free world may not be a better place’

Friday, February 19th, 2010

Arthur Caplan, writing at MSNBC.com, reacts to a report by the Associated Press that genetic testing is leading to the birth of fewer and fewer children with Down syndrome and other genetic diseases in the United States. An excerpt:

On a trip to Ireland a few years ago, I was struck by a number of faces among the crowds. They were children with the tell-tale look of Down syndrome.

What struck me was the realization that I hardly ever see these young faces out on the street in the United States.

… Reducing the burden of disease is obviously a good thing. But genetic testing of parents, and, as is now happening with increasing frequency, embryos, raises some difficult ethical challenges as well.

… As some families with a Down syndrome child have noted, fewer kids with Down may mean fewer public programs, fewer resources in schools and for housing and less political clout. If some genetic diseases begin to fade away, will society’s willingness to provide support for the diminishing numbers of those born with such diseases fade as well? And are we headed to a time when parents who choose not to be genetically tested find themselves condemned as morally irresponsible parents?

Caplan is director of the Center for Bioethics at the University of Pennsylvania.

Scientists: Testing curbs some genetic diseases

Thursday, February 18th, 2010

Carrier screening, embryo screening and prenatal testing are credited

Hot-button issues: Abortion, embryo destruction and eugenics

By Marilynn Marchione, AP/USA Today:

An investigation by the Associated Press concludes that some inherited diseases are declining and others have nearly disappeared, a trend that is credited to the increased use of genetic testing either before or after conception. A study in California found a reduction of almost 50 percent in the number of babies born with the most severe form of cystic fibrosis because many parents chose abortion.

Geneticists and other experts say a growing number of people are getting tested for genetic mutations before they try to get pregnant, while increasing numbers are screening embryos and fetuses and continuing only with those that get a clean bill of health.

An excerpt:

Genetic testing pushes hot-button issues: abortion, embryo destruction and worries about eugenics – selective breeding to rid a population of unwanted traits. Yet it is touching a growing number of people.

… “We’re definitely seeing decreased rates of certain genetic disorders as a result of carrier screening,” said Dr. Wendy Chung, clinical genetics chief at Columbia University.

… Eliminating disease is a noble goal but also “should give us pause,” [Dr. Barron Lerner, a Columbia University medical historian] wrote recently in the New England Journal of Medicine.

“If a society is so willing to screen aggressively to find these genes and then to potentially to have to abort the fetuses, what does that say about the value of the lives of those people living with the diseases?” he asked.

Related story: Sequenom unveils first trimester tests to diagnose cystic fibrosis, sex of fetus

Sequenom settles lawsuit for $14 million plus stock

Tuesday, January 19th, 2010

From the San Diego Union-Tribune, ABC News, Reuters:

Sequenom, a diagnostics testing and genetic analysis company, has announced it will pay $14 million and an undisclosed amount in stock to settle an investor class-action lawsuit over mishandling of data in the development of a potentially lucrative prenatal test for Down syndrome. The company did not admit wrongdoing.

The lawsuit came after the company’s stock lost more than three-quarters of its value last April. The company said then that its projections of the reliability of its prenatal test were not reliable, and said unnamed employees had not handled test data properly. Five top officers were fired and another resigned.

Investigations by the Securities and Exchange Commission, the FBI, and federal prosecutors are still pending.

BNET columnist Jim Edwards
said changes in corporate governance announced as part of the settlement suggest that lawsuits against the company “seem to have introduced adult supervision at a company in dire need of it.”

Sequenom officials had estimated that the worldwide market for a prenatal test for Down syndrome is worth between $3 billion and $5 billion.

Earlier posts here.

‘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.”

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More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This website attempts to aggregate news and commentary about disability, and to document the efforts of people who are seeking new ways to address familiar challenges.

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