Doctor says Canadian bio-parents demanded termination; Surrogate mom refused, then relented

‘Should the rules of commerce apply to the creation of children?’

From the Vancouver Sun, [UK] Daily Mail:

A Canadian surrogate mother reluctantly terminated her pregnancy at the insistence of the fetus’ biological parents after it was learned that the fetus had an elevated risk of Down syndrome, a Vancouver-area doctor revealed at a recent fertility medicine conference.

The case, in which the surrogate mother initially resisted the abortion and later relented, has sparked a spirited ethical debate over legal oversight of surrogacy arrangements.

Dr. Ken Seethram of the Pacific Centre for Reproductive Medicine in suburban Vancouver said the surrogate had signed a contract with the biological parents that would have absolved the couple of all financial responsibility for raising the child. He did not disclose the identities of the parties, but said the case had occurred within the past year and involved an embryo that had been created with the parents’ egg and sperm.

A bioethicist who has studied the issue extensively argues that contract law should not apply to the transaction, unless human life is to be treated like widgets in a factory.

“Should the rules of commerce apply to the creation of children? No, because children get hurt,” said Juliet Guichon of the University of Calgary. “It’s kind of like stopping the production line: ‘Oh, oh, there’s a flaw.’ It makes sense in a production scenario, but in reproduction it’s a lot more problematic.”

Related editorial in the Calgary [Alberta] Herald: ‘Vital debate needed on surrogacy and other IVF issues’

An excerpt:

It could be argued that the terms of the contract need to be spelled out clearly be-fore the surrogacy gets underway, but then that lends the resulting infant the status of a manufactured good — and nobody should be comfortable placing a human being on such a level.

… What needs to be kept uppermost in mind while sorting through the moral and ethical ramifications of the complex scenarios in vitro fertilization has engendered, is that a human being — not a commodity or product — is the subject matter.

From the Melbourne, Australia, Herald Sun:

Health Department officials in the Australian state of Victoria report that the number of women who terminated their pregnancies after receiving a prenatal diagnosis of Down syndrome almost tripled in the decade ending in 2006.

Government figures showed 146 abortions for Down syndrome in 2006, including five late term abortions, compared with 54 in 1995.

They also show more than twice as many babies with Down syndrome were aborted than were born with the condition — in 2006 146 were terminated and 62 were born.

A spokeswoman for the Royal Australian and New Zealand College of Obstetricians and Gynecologists attributed the increase to more advanced screening.

Related story:

Two couples suing doctors for failing to diagnose Down syndrome — Melbourne, Australia, Herald-Sun

Two Victorian couples are suing doctors for failing to diagnose Down Syndrome in their unborn babies, denying them the chance to terminate the pregnancies.

The couples are claiming unspecified damages for economic loss, continuing costs of care of the children, and “psychiatric injury”.

Both say they would have aborted their pregnancies had they been told their children would be born with Down Syndrome.

Rick Santorum, former Republican senator from Pennsylvania and Fox News contributor, celebrates his daughter’s second birthday with an op-ed in the Philadelphia Inquirer. Isabella has Trisomy 18, and has survived despite the dire predictions of doctors and experts. Santorum says Bella’s life may not be long, but “she is worth every tear.” An excerpt:

Being the parent of a special child gives one exceptional insight into the negative perception of the disabled among many medical professionals, particularly when they see your child as having an intellectual disability. Sadly, we discovered that not only did we have to search for doctors who had experience with trisomy 18. We also had to search for those who saw Bella not as a fatal diagnosis, but as a wanted and loved daughter and sister, as well as a beautiful gift from God.

… Living with Bella has been a course in character and virtue. She makes us better. And it’s not just our family; she enriches every life she touches. In the end, isn’t that what every parent hopes for his or her child?

From the New York Times:

A parliamentary hold has been placed on the nomination of autism self-advocate Ari Ne’eman to the National Council on Disability amid a growing controversy about his views. President Obama’s seven other nominees to the council were confirmed by the Senate this month.

Ne’eman, 22, has a diagnosis of Asperger syndrome and is the founder of the Autistic Self-Advocacy Network. He has said that autism is a naturally occurring form of “neurodiversity” that should be embraced and accommodated, not cured. Critics, including the co-founder of the advocacy group Autism Speaks, say Ne’eman’s view fails to represent individuals on the autism spectrum who lack basic communication and self-care skills.

Historically, the kind of genetic research supported by many parents of children with autism, Mr. Ne’eman has said, has been used to create prenatal tests that give parents the ability to detect a fetus affected by a particular condition, like Down syndrome, so that they can choose whether to terminate the pregnancy.

“We just think it makes more sense to orient research to addressing health problems or helping people communicate rather than creating a mouse model of autism or finding a new gene,” Mr. Ne’eman has said.

Earlier posts here.

(Photo from “No Myths” PSA)

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.

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

In an essay that’s in the most-viewed spot at the [Toronto] Globe and Mail‘s website, Edmonton mom Sue Robins says she felt as though she’d been slapped when a fellow preschool mom asked her why she didn’t get prenatal testing. Robins’ son, Aaron, has Down syndrome. After escaping to her car, Robins burst into tears. An excerpt:

Why do I have to justify my son’s very existence? Why isn’t it okay that he’s alive? What are you afraid of?

For those of us who have children whose extra chromosomes could have been detected prenatally, it is a long and lonely road. We get asked these questions. We get frantic calls from friends who are considering amniocentesis because their triple-screen prenatal test has come back elevated. The whole genetic testing thing is fraught for parents who have kids with disabilities.

One day it won’t just be “us.” With the clever mapping of genes, there may be tests for all the lovely imperfections of life that make us human. All in the quest for the blue-ribbon baby.

What I should have asked the mom in the playground was, “What if your daughter was in a car accident tomorrow and had a brain injury? Would you love her any less?”

When you can answer those questions, I will answer your questions.