Special Report
An Epidemic, Delayed
A new genetic test for Down syndrome is put on hold — most likely on temporary hold.
Technological advancements have afforded many benefits to the pro-life cause. Ultrasound imaging has revealed the child in the womb as a living, feeling human being, and at earlier stages than previously thought possible. The widespread use of such technology helps explain significant shifts towards the pro-life position — both in sentiment and in deed, especially among young Americans — over the last fifteen years.
But medical technology has had some negative effects, too, especially for unborn babies with disabilities. Ultrasound imaging is routinely employed to discern genetic abnormalities in unborn children and to end the lives of those who fail to meet the standards of a culture that increasingly views genetic perfection as an entitlement.
This month, Sequenom, a company that makes genetic analysis products, was set to release a new genetic test for Down syndrome. The test, called SEQureDX, has been hailed by some as “the Holy Grail of genetic testing,” because it is safer and more accurate than any previous prenatal genetic test. But once it hits the market, SEQureDX may become known for something far less inspiring: as a leading tool for the elimination of an entire class of people.
Currently, prenatal genetic testing involves a combination of blood tests and ultrasounds to determine whether an unborn child faces significant risk of having a disability. Some women undergo further testing to confirm or rule out a diagnosis. The most common test in amniocentesis, in which amniotic fluid is extracted from the amniotic sac surrounding the baby. Fetal DNA in the tissue contained in the fluid is then examined for genetic abnormalities.
But many women eschew amniocentesis. Not only must amniocentesis wait until the second trimester of pregnancy, but it also carries a significant risk of miscarriage (as high as 2 percent) and risks causing fetal abnormalities, pre-term birth and fetal trauma.
The new tests, including SEQureDX, are less invasive, more accurate and can detect a broader range of fetal conditions with more sophisticated blood tests that examine a baby’s genetic information in DNA that circulate in the mother’s bloodstream.
Though the new tests are safer for both mother and child, they will create a profoundly unsafe environment for babies who test positive for genetic abnormalities.
Surveys have shown that as many as nine out of 10 babies with Down syndrome are aborted once their disability is detected. Even using the more invasive prenatal genetic testing, the number of Down syndrome live births declined 7.8 percent between 1989 and 2001, according to a study published in the American Journal of Obstetrics and Gynecology.
But the number of babies born with disabilities could plummet once the new tests become available, and as more physicians begin to follow the advice of the American College of Obstetricians and Gynecologists (ACOG), which in 2007 recommended universal screening for Down syndrome.
All of this worries pro-life and disability rights advocates, who fear what may result when such tests are put in the hands of a medical establishment with a decidedly anti-life bias against disability. In a recent article in the Journal of the American Medical Association, Peter A. Benn and Audrey R. Chapman argue that the new tests raise “significant ethical issues,” which will require an “ill-prepared medical system to change how patients are counseled and how cases are managed.” Benn and Chapman call for oversight of genetic testing by the United States Food and Drug Administration.
A further fear is that screening for disability and disease in unborn children will lead to widespread use of techniques that allow couples undergoing fertility treatments to create embryos and select both gender and physical traits in a baby. Pre-implantation genetic diagnosis, or PGD, allows parents to create designer babies by screening and then destroying embryos determined to have higher risk of severe genetic conditions. So parents can screen embryos that are the “wrong” sex, or that have the “wrong” eye or hair color, height and other physical traits in what the director of one clinic in Los Angeles calls “cosmetic medicine.”
Polls show most Americans oppose genetic testing for cosmetic enhancement (one poll found about 10 percent of respondents supported genetic testing for athletic ability). But there is potential for it to catch on, especially since, even though PGD is banned in many other countries, it is completely unregulated in the United States.
Also, polls show public support for abortion is strongest when testing indicates a high likelihood of fetal abnormality. That explains why Sequenom’s CEO, Harry Stylii, believes the market for prenatal testing for chromosomal disorders like Down syndrome could be $3 billion to $5 billion or more worldwide. It also explains why shares of Sequenom increased 200 percent in 2008 after the company revealed successful early testing of SEQureDX.
But recent developments may delay the impending epidemic of disability abortions caused by enhanced genetic testing. In February, due to “mishandling” of data by employees, Sequenom revised downward the results of its initial tests, re-estimating the accuracy of SEQureDX from 99.9 percent to 96.6 percent.
Then, in May, five investors filed suit against Sequenom for issuing materially false and misleading statements about the accuracy of its Down syndrome test. That followed an April 29th announcement that the company would delay launching SEQureDX in order to review all test data.
None of this means unborn babies with disabilities will be granted an extended reprieve. Sequenom says it wants to have a validated test by the fourth quarter of 2009 and new tests launched by late 2010 or early 2011. And at least three other companies are developing similar genetic tests and hope to have them on the market by the end of the year.
A mother’s womb is already the most hazardous place on earth for a baby. It won’t be long before it becomes a death chamber for almost all babies with disabilities.
About the Author
Daniel Allott is a writer in Washington, D.C.
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Son Of Sam | 6.8.09 @ 8:25AM
I've been watching TV for a long time now; sci fi is my particularly favorite format. I have a rule of thumb which I call the "swastika syndrome": if a TV series that is NOT set in the era of World War Two suddenly finds itself besieged by Nazis, then the series is about to be cancelled. Why? Simple: because the writers have run out of ideas. So they reach for the oldest of all stock villains, the Nazis. It's a simple way of saying "shit, here come the bad guys!" without having to explain very much. Because it's self evident that the Nazis are bad, and are still scary, even though the original Hitler henchmen have been in the ground for decades.
But if you ask any random person WHY the Nazis are so bad, you'll get many responses, most of them valid, and very few of them having anything to do with the core of their ideology, which was the insane notion of a "perfect" master race. They practiced genocide against "inferior" foreign people after they had tested it out against "inferior" Germans: the disabled.
Tell me, if we are really aborting 9 out of 10 Down's Syndrome infants, what sets us apart from those damned Germans? How are we NOT practicing some form of "master race" ideology? How far does it go? And can anyone tell me where "the line" is drawn? You know, the point beyond which we as a society will NOT cross? And can someone reassure me that I myself am not somehow going to be on the wrong side of the line?
stand strong until freedom dawns
Son Of Sam
http://www.samadamssos.bravehost.com
Pingback| 6.8.09 @ 9:20AM
RAISING JOEY » Blog Archive » Keep delaying… links to this page. Here’s an excerpt:
Tim| 6.8.09 @ 9:57AM
A national healthcare system could mandate testing as acost savings method. Think of the millions, nay billions that can be, ahem, "saved" by euthaniasia for the weak and sick at both ends of life.
"I'm very sorry Mr and Mrs Jones but our genetic analysis leads to a lifetime cost curve that is fiscally prohibitive."
PolishKnight| 6.8.09 @ 10:24AM
SonOfSam, people commonly practice eugenics whenever they reject unattractive or stupid people as potential mates despite them being otherwise worthy parents.
So what?
The Nazis did "bad" things besides practice eugenics. They also practiced (as a combination) genocide, invaded other countries for material gain, and had a big government control agenda. In other words, they weren't that much different than many regimes of the past and even present that did similar things only they took it to a new level. Joseph Stalin was far more evil than Hitler but we didn't hear about it because the American left loved him so much (and still do.)
I never liked the "women's right to her body" constitutional claim that the left crowbarred to justify abortion, but at the same time I dislike the idea of trying to protect children so much that they ultimately become wards of the state from conception. How else to protect an unborn child than to require bars to give pregnancy tests to fertile women before serving them alcohol, regulate what pregnant and fertile women eat and drink, and even tell fertile men to exercise and eat healthy to optimze their sperms' health? Will cameras be installed in homes to ensure compliance? Be careful when you violate Godwin's law and trot Nazism out as a rationalization for some policy because it may wind up making things look awful lot like it.
Jon B| 3.13.10 @ 6:24AM
Obama's restoring of funds for pregnancy prevention measures in the world's poorest countries reduced abortions by 10's of millions in the next 8 years. Republicans lie about the Mexico City Policy by falsely claiming it funds abortions, etc. It's been illegal for US $'s to fund abortions overseas since 1973, but we DO fund pregnancy prevention measures, emergency field birth kits, etc.
http://www.religioustolerance.org/abo_wrld.htm
1993: Repeal of the funding ban: President Clinton felt that private, foreign organizations should be able to receive USAID funding for that part of their programs that involved pregnancy prevention, even though they used their funds raised elsewhere to finance abortions or to appeal for abortion reform. On 1993-JAN-22, his second day in office, he rescinded the executive order.
2001: Reinstatement of the funding ban: On 2001-JAN-22, during his first day in office, President George W. Bush reinstated the funding ban for family planning programs run by agencies that also provide abortion services out of their own funds. His rationale was somewhat confusing. He wrote to the U.S. Agency for International Development: "It is my conviction that taxpayer funds should not be used to pay for abortions or advocate or actively promote abortion, either here or abroad." But no such funds have ever been granted. Existing legislation prevents foreign grants from being used to fund abortions or provide abortion counseling.
http://www.commondreams.org/views01/0126-05.htm
January 26, 2001: Family planning research groups, such as the Alan Guttmacher Institute, last year said that if US funding levels were restored to the $540 million (from $425 million), the following would happen: Nearly 12 million more couples in developing countries would gain access to modern methods of contraception.
There would be 4.3 million fewer unintended pregnancies, 1.5 million fewer unintended births, 500,000 fewer miscarriages; 2.2 million fewer abortions each year; 8,000 fewer deaths from unsafe abortions, 7,000 fewer deaths from other causes related to pregnancy and 92,000 fewer deaths of infants.
Bush cut funding on 1-22-2001, then cut it some more in 2002, so it was roughly 1/2 or just over $200 million. However, some of it was restored because of his 2003 Africa/Aids program, which he didn't fully fund either. Bush cut aids funding completely in early 2001, and dropped another program in Congress (around $800K more) too. then restarted the program 2 years later promising roughly the same $ amount he prevented in the first place.
Old Texican| 6.8.09 @ 11:46AM
Honestly folks, I was going to lengthen my comment on another article this morning to discuss my personal "list" of possible triggers to cause "we the overheated frogs" to start jumping out of the pots and pans in every direction.
Honestly...the first trigger that came to mind concerns nationalized health care.
What if: Some government bureaucrat decided to kill YOUR baby in the womb, because of a possible defect of some sort?
How about if that same sort of bureacrat decided to let your older loved one die, or remain crippled becase it is "cost effective"? WHOAH NELLIE!
Aaron| 6.8.09 @ 11:55AM
I can't believe that I live in a world where its legal to kill innocent babies but not stupid adults.
tnxplant| 6.8.09 @ 2:02PM
Gattaca, anyone?
PK's statement that an individual's choice of mate based on attractiveness/intelligence/potential parenting skills is the practice of eugenics should check the definition of the word:
Eugenics: "The study of hereditary improvement of the human race by controlled selective breeding." (American Heritage Dictionary of the English Language 2009)
Implicit in its definition is the connotation of external control, not by an individual making his/her distinct choice of mate, but by a controlling authority making those choices for people. Adolf Hitler and Margaret Sanger come to mind.
Besides, individual views of attractiveness, intelligence, etc. vary widely, as anyone observing the world around us can see.
PolishKnight| 6.8.09 @ 3:36PM
tnxplant, you're quibbling. In the case we're discussing here, individual people would be making INDIVIDUAL decisions as to whether to test for fetal genetic deformities and abort. So using your definition, then the comparison of the test to Nazi eugenics is invalid in the first place.
Nice try though.
To elaborate on my point with you bringing up Gattica: It's common for employers to discriminate based upon attractiveness. In China, it's not uncommon for companies to have height requirements for office jobs. I thought Gattica was unrealistic in several ways especially regarding how he supposedly was able to fool the DNA and medical tests to keep his job which was supposedly to become an astronaut. (As if they don't check out astronauts beyond a simple urine and blood sample?)
In addition, most of the discrimination today is based upon political agendas for special interest groups that are counter-eugenic. Handicapped people, for instance, get precedence over better performing able bodied people.
Finally, I'm chuckling over the histrionic arguments that if a policy could result in nasty government fascist oppression, then it's baaad. If that's the case, then ban organized religion immediately.
IC| 6.8.09 @ 3:44PM
genetically impaired embryos usually spontaneously abort due to non-viability. A Screening is just cooperation with god's plan writ in our DNA.
Conrad Spiracy| 6.8.09 @ 4:26PM
I have worked for the last nearly 13 years with a wonderful woman. Her son, her first child, is a Down child. Tripp (now in his 30s) has been a huge blessing in her life. She has rejoiced in all of his developmental achievements. You should see the smile on her face every time she talks about something Tripp has achieved. He plays guitar very well and is productively employed.
My baby sister had an amnio during her second pregnancy due to suspected problems. Her baby (a son) was found to have a genetic defect. They recommended she abort because the baby "probably" wouldn't go to term anyway, and that she would "probably" experience complications as a result of continuing to carry. Well, she went to term with no problems, Mark Patrick was born alive, and she and her husband were able to enjoy his new life for about 30 minutes before he passed away.
Absolutely nobody can replace those experiences that my friend and my sister enjoyed. There is no reason to practice eugenics. The challenges that life presents to us are the blocks upon which we build our strengths. An unknown preacher once said, "Adversity is life's university" - how true.
Corad Spiracy
A Proud Conservative Bleeding Heart
Roy| 6.8.09 @ 7:40PM
Re:PK
Sure. Ban atheism and disorganized religion too..in fact, ban human beings, since they can be abused for evil government purposes..
Pingback| 6.8.09 @ 8:26PM
Disability News | PatriciaEBauer.com » News Archive » Writer sees ‘impending epidemic links to this page. Here’s an excerpt:
tnxplant| 6.8.09 @ 9:28PM
PK, I didn't give an opinion at all on the case under discussion here, so I'm not sure why you say "So using your definition, then the comparison of the test to Nazi eugenics is invalid in the first place." (It's not my definition, by the way.)
I never compared the test to Nazi eugenics. I simply stated that your example of "eugenics" did not meet the definition of the word. I don't think that expecting words to mean things is petty or irrelevant. A simple word search of this page shows that the word "eugenics" first appears in your 10:24 AM post in response to Son of Sam, who said "How are we NOT practicing some form of "master race" ideology?", not in response to the actual article.
I am not sure that the original article actually suggests any sort of government mandated control over which fetuses are allowed to mature based on the testing described. The author is concerned that it would be much easier for women to undergo the testing without the risk of miscarriage that amniocentesis poses. This then would, in his opinion, lead us down a slippery slope toward choosing designer babies.
You are free to make your case; I simply think that using words properly makes a much stronger argument.
PolishKnight| 6.8.09 @ 10:59PM
tnxplant, I'm chuckling at your weaseling around with the dictionary to avoid simply addressing the point I made: People already make "designer babies" via their own personal choices apart from pregnancy decisions.
FYI, before you run to the dictionary as a bible of truth, consider that nowhere in the dictionary is abortion defined as murder of a baby (or babies, if you want to snipe about plural versus singular tense there) therefore, it isn't murder using your thinking. Perhaps you ought to tell pro-lifers to try using words properly if they wish to make a stronger argument...
Wasn't that fun?
PolishKnight| 6.8.09 @ 11:01PM
Roy, I was merely illustrating how this thinking is invalid by use of an example that would resonate with this forum's readers. Atheism, FYI, has been declared a protected religion: http://www.worldnetdaily.com/news/article.asp?ARTICLE_ID=45874
tnxplant| 6.9.09 @ 8:03AM
PK, I have to disagree with your premise because when people choose mates and have babies, there is no guarantee of the attractiveness or intelligence or other characteristics of those babies. (Two very attractive people may produce a child who is quite ordinary looking.) The choosing of a mate is not comparable to genetic testing (which may potentially lead to termination of a pregnancy) in order to "design" a baby.
I still maintain that words mean things and should be used properly. I am well aware that the word "abortion" does not mean murder. For example, a miscarriage is a type of abortion called spontaneous abortion. The word "abortion" simply refers to the premature ending of a pregnancy. The means of ending the pregnancy is not specified and requires a qualifying term. I would agree that pro-lifers should use that word properly as well instead of giving it a connotation it does not have.
PolishKnight| 6.9.09 @ 10:38AM
Tnxplant, the controversial genetic test in discussion is only 96 to 99% accurate and doesn't "guarantee" perfect babies either. That doesn't change the fact that people (individuals and collectively as an aggregate) make procreative, darwinistic choices that result in more smart, attractive babies being born and raised than not. Unless you're a creationalist, this is how we got here. This observation of reality is not a moral endorsement of darwinism or government eugenics programs.
Regarding dictionary and spelling arguments: The purpose of accurate syntax, grammar and dictionary use is for common understanding. You KNEW what I meant by my use of the word eugenics and you thought you could make an easy personal put down rather than address my point. So whose out to obfuscate communication? For the record, I don't think your little snipe was even accurate. You chose to INTERPRET the dictionary cite of the word to mean that it could only apply to "external control" "implicitly" yet there's nothing in the cite that says as such.
KyMouse| 6.9.09 @ 3:41PM
I know plenty of people who have developmental disabilities (such as Down syndrome) yet are productive members of society and very loving people. When they are able to find jobs, they tend to be punctual and hard-working. And I believe they teach the rest of us a lot about being compassionate (or at least they can, if we let them). Besides, any one of us can become disabled after birth, through an accident or illness. Who will defend US when Big Brother says that we aren't worthy of life?
I know a couple who were told before the birth of their daughter that she was anencephalic -- no brain. They were strongly advised to abort her, but refused on religious grounds. As it turned out, the docs were wrong; today, she is an honor student. I wonder how many other misdiagnoses have been made, and how many parents haven't been told that the babies they aborted were okay after all?
Man, it was close| 6.10.09 @ 12:38AM
The average IQ of readers of this paper: 77.
The average IQ of writers of this paper: 81. YOU WIN!
PolishKnight| 6.10.09 @ 11:02AM
KyMouse, you're using two classic arguments against abortion:
1) The possibility that it may be the next Beethoven.
2) Slippery slope: Even seemingly healthy people by today's standards could be targeted in the future to produce a perfect society.
Let's address #1: There are examples of people who have had children out of wedlock as teenagers, been rock poor, and produced offspring who went on to do great things. That doesn't change the fact, though, that society would be better off if all these people had waited until they were responsible adults to have children. The fallacy is in looking at a single positive case, and ignoring everything else. By that logic, it's better to buy lottery tickets than put money into banks that can fail.
2) Slippery slope. Almost any policy can be taken to an extreme hence the strong safeguards we have as a society on limited, balanced, government, etc. It's proper to express concerns that an unpleasant individual moral choice might result in monstrous government policies later. But they key is that they are two different things. My choosing to order a pizza isn't the same as the government sending jack booted thugs to your place to force you to do the same.
All that said, I'm not using these observations to dismiss the moral questions about abortion.
Pingback| 6.22.09 @ 1:13AM
The American Spectator : An Epidemic, Delayed | Unique Baby Shower Gifts links to this page. Here’s an excerpt:
matt jones| 7.21.09 @ 3:41PM
Riddle me this: if the mentally hadicapped and physically disabled are a class of people in the same status of other classes, why do they recieve special education and care in a nation that treats all individuals equally and with fairness? this is because mental and physical diadvantaged individuals are not classes, rather they are disadvantaged peoples who recieve special care where and when nessesary. this does not define such individuals or their existence. further more we allow such specialty treatment because as citizens that must rely on one another for help and our continued survival we recognize the right of others no matter how disadvantaged to gain from oppurtunities that level the perverbial playing field. in that underastanding, their are those who would not birth individuals of which they could not take care of, and believe would not b able to effectivly handle the responsibility. these are not bad people and are making informed and foresight embedded choices that try to imagine the possibilities of the outcomes that belong to each choice that can possibly made. thus, they are not comparable to individuals who would eliminate their children on the basis of meaningless physical characteristics such as sex, or eye color. such individuals will no doubt hold resentment towards their children born or unborn, and are no doubt influenced by problems much greater than abortion or genetic testing. in other words forcing them to have the children will not make them act any differently towards them once they are born. with that bit of common sense it can be seen that unlike this author would have us believe, genetic testing and abortion are not are true enemy, but rather the true nightmare is the engendered discriminatory beliefs individuals hold for one another. our efforts should be directed towards weakening and destroying such derilict and dangerous architectures of the mind.
Pingback| 8.3.09 @ 6:38PM
The American Spectator : An Epidemic, Delayed | Personalized Gifts For Babies links to this page. Here’s an excerpt:
Pingback| 10.6.09 @ 5:32AM
The American Spectator : An Epidemic, Delayed | All For Your Babies links to this page. Here’s an excerpt:
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