Would it be a good thing if new, more accurate blood tests could help bring about the elimination of all people with Down syndrome from the population? In answer to that question, bioethicist Art Caplan of the University of Pennsylvania tells Good Day Philadelphia on Fox 29 News he’s not sure. A partial transcript:

Caplan: A lot of people would say look, Down syndrome — it’s a disability but the child doesn’t suffer. Down syndrome children are normally pretty happy, loving, caring. And on the other hand, people are gonna say wait a minute. I should have the right to get a test, and if I do or don’t want to have a child with a disability, that’s up to me.

… I think what we’re going to have to insist upon is good counseling. if you just take the test and someone says oh, you have a child who’s going to be disabled, you’re not hearing, you know, Down’s kids may be something that you can live with, they are great to have in the family.

So I think it’s important to have somebody counsel you in the test. And what I’m worried about is that we don’t mandate counseling to go with testing, just to give the full picture …

Host John Anderson: Now there some out there who say okay, let’s do the test because if this works, we can get the Down syndrome population down to practically nothing. And we’re all for a healthier lifestyle. But is that realistic — to think that we would eliminate this type of population?

Caplan: I’m not sure it’s realistic. I’m not sure it’s good.

See video here.

Comments, readers? What’s your take?

From National Public Radio:

As a woman gave birth to octuplets at a hospital near Los Angeles on Monday, she let loose an intense debate about the ethics of megamultiple births.

… “I don’t know any case where some of the children were not severely disabled,” Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania tells NPR’s Madeleine Brand.

Caplan said the case raises a host of ethical questions about fertility treatments and multiple births: the likelihood of disabilities among the babies, the use of hospital resources, and the high cost of medical care to the mother and babies.

See also:

Octuplets’ mother already has twins, four other children — Los Angeles Times

Octuplets’ family filed for bankruptcy — CBS News

Writing in the New York Times’ annual ‘Lives They Lived’ issue, philosopher Peter Singer memorializes the life of disability rights advocate Harriet McBryde Johnson.

Johnson was perhaps best known for her 2003 New York Times Magazine cover story Unspeakable conversations. The first-person piece described her journey to Princeton University to debate Singer over his advocacy for the legalization of selective infanticide of children with disabilities. The cover of the magazine carried a photo of Johnson in her power wheelchair (left) with the headline “Should I have been killed at birth?”

Singer recalls Johnson’s visit to Princeton, and alludes to the impact she has had on his thinking. An excerpt:

My students talked about Johnson’s visit for a long time, and our conversations stayed with me, too. Her life was evidently a good one, and not just for herself, because her legal work and political activism on behalf of the disabled was valuable to others as well. I know that surveys have found that people living with disabilities show a level of satisfaction with their lives that is not very different from that of people who are not disabled. Have people with long-term disabilities adjusted their expectations downward, so that they are satisfied with less? Or do even severe disabilities really make no difference to our happiness, once we get used to them?

… According to her sister, Beth, what most concerned Harriet about dying was “the crap people would say about her.” And sure enough, among the tributes to her were several comments about how she can now run and skip through the meadows of heaven. Doubly insulting, first because Johnson did not believe in a life after death, and second, why assume that heavenly bliss requires you to be able to run and skip?

Singer’s piece carries the headline: ‘Happy nevertheless: An ongoing conversation about a disabled life.’

(Photo from New York Times)

Earlier posts:

• Harriet McBryde Johnson: ‘A life worth living’
• Harriet McBryde Johnson: An appreciation
• Harriet McBryde Johnson, 50: Attorney, disability rights advocate

From the Los Angeles Times, New York Times:

A California jury on Thursday acquitted transplant surgeon Hootan Roozrokh (left) of intentionally harming a disabled man in an effort to harvest his organs. The case had drawn widespread attention to the medical and ethical complexities of organ transplantation.

Roozrokh was accused of prescribing excessive drugs to hasten the death of Ruben Navarro, a comatose man who had a neurological disorder known as adrenoleukodystrophy as well as cerebral palsy.

Roozrokh’s lawyer said the surgeon had been trying to ease the patient’s suffering when other doctors failed to perform their duties.

University of Pennsylvania ethicist Arthur Caplan said the case had underscored flaws in the system.

“At the end of the day, we’ve got increased pressure for more organs,” he said. “There’s a growing waiting list; there are more centers competing for donors; and it’s a very lucrative procedure for hospitals. It’s against that backdrop that the story of a doctor being sent out to come back with organs unfolds.”

Roozrokh still faces a hearing before the Medical Board of California.

Earlier posts here and here.

(Photo from New York Times)

Mark Henderson, science editor of the [UK] Times, says the prospect of a reliable and risk-free prenatal blood test for Down syndrome points up the need to educate medical professionals on how to counsel prospective parents about the tests and the results. An excerpt:

At present, only about 32,000 high-risk women [in the UK] are offered tests that diagnose Down’s reliably, after full counseling about the implications. When the new procedure comes in, 20 times this number will be suitable for such accurate diagnosis. There is a real danger that without detailed planning, not all of them will get the counseling they need to make informed decisions about how much they want to know, and how they might deal with unwelcome news.

The success of a Down’s blood test will require more than clever science. Just as important will be careful thought about how it will be delivered by health professionals, and explained to pregnant women and their partners.

From the BBC, [UK] Channel 4:

A UK charity representing people with Down syndrome has condemned as “unhelpful” recent research concluding that prenatal testing for the condition is resulting in widespread miscarriages of fetuses that did not have Down syndrome.

The study, conducted by researchers associated with Down Syndrome Education International, estimated that two unaffected fetuses are miscarried for every three pregnancies involving Down syndrome that are terminated as a result of prenatal screening and testing. The research estimated that 400 UK miscarriages could be attributed to prenatal testing for Down syndrome annually; an estimated 660 UK pregnancies are aborted following a Down syndrome diagnosis each year.

Speaking for the UK Down’s Syndrome Association, Professor Jennifer Wishart, professor of developmental disabilities in childhood at the University of Edinburgh, said:

“There has never been any dispute that current diagnostic techniques have associated risk and that women need to be better and fully informed of these risks.

“The ‘two for three’ emphasis – that two healthy babies are lost for every three babies with Down’s syndrome prenatally detected – simply muddies the waters.”

See also:

• Two healthy babies miscarried for every three Down’s syndrome babies detected — [UK] Telegraph
• Tests to detect Down’s syndrome are damaging too many unborn babies — [UK] Mirror

Earlier post here.

From the Los Angeles Times and the [Toronto] Globe and Mail:

Andre Lalonde, executive vice president of the Society of Obstetricians and Gynecologists of Canada (SOGC), says he is concerned that abortions in the case of Down syndrome may decline as women follow the example of Sarah Palin. Palin’s infant son Trig was born after she received a prenatal diagnosis of Down syndrome. From the Globe and Mail:

As a vocal opponent of abortion, Ms. Palin’s widely discussed decision to keep her baby, knowing he would be born with the condition, may inadvertently influence other women who may lack the necessary emotional and financial support to do the same, according to Lalonde.

Dr. Lalonde said that above all else, women must be free to choose, and that popular messages to the contrary could have detrimental effects on women and their families.

The SOGC last year issued a recommendation that all pregnant women be offered screening for Down syndrome. It is estimated that 90 percent of women in Canada who receive a prenatal diagnosis of Down syndrome decide to abort their pregnancies.

Krista Flint, executive director of the Canadian Down Syndrome Association (CDSS), said doctors generally paint a very dark picture of life with Down syndrome during prenatal diagnoses. The CDSS has challenged the ethical implications of the recommendations by the obstetricians’ group.

“We know overwhelmingly the message families get is ‘Don’t have this baby, it will ruin your life,’” Flint says. “And I don’t think people would look at Sarah Palin and see a ruined life. Regardless of politics, I think it’s a good example.”

See earlier post: Airbrushing away diversity — Ottawa Citizen

UPDATE: The Los Angeles Times notes in a ‘For the record’ item that its story noted above “mischaracterized” Dr. Lalonde’s comments. The item says Dr. Lalonde was not concerned that abortions in general would drop as a result of Sarah Palin’s candidacy. Rather, he was concerned that “that women would be influenced by Gov. Palin’s decision to keep Down syndrome children that they were neither emotionally nor financially prepared to care for.” The Times story noted above has been removed from the newspaper’s website.