Gender Selection News : Ethics

Misleading "Slate" article slurs PGD

Maureen — Sat, 16 Sep 2006 07:25:00 GMT

"Now you can design your own baby. But should you?" is the tantalizing teaser for this week's much-quoted article about preimplantation genetic diagnosis in the online magazine Slate. The inaccurate and sensational lead-in is entirely appropriate for the misleading, fear-mongering article. I guess this is what happens when an article about advanced reproductive technologies falls into the hands of your chief political correspondent (William Saleton): the facts get completely lost in the spin.

Let's get one thing straight: You cannot "design" a baby. No technology exists to doctor an embryo to create desired traits, nor repair an embryo to correct genetic flaws. Preimplantation genetic diagnosis (PGD) is simply a screening test that provides genetic information about an existing embryo -- an embryo which has the exact same genetic makeup, inherited from its parents, as it would if it had been conceived at home in bed.

Saleton's scary article covers the "slippery slope" and eugenics bogeys, following the well-worn template laid down by other journalists who are equally ignorant of the basic facts about getting pregnant using IVF. (PGD testing can only be done as part of an IVF cycle.)

Putting the brakes on the slippery slope

First, we have hand-wringing over the injustice of screening embryos not just for devastating childhood illnesses, but even for manageable health problems that don't occur until later in life, or perhaps not at all.

...an American patient who plans to screen her embryos for an arthritis gene. The probability that the gene will cause the disease is only 20 percent, and if it does, the disease is highly manageable. Once you screen for one gene, it's tempting to screen for others.

The notion that parents shopping for the perfect baby can present a laundry list of potential diseases, and only accept embryos that match their stringent criteria, ignores a very basic fact of IVF life: in any IVF cycle, a woman can produce only a limited number of eggs, which become a fewer number of viable embryos. Couples don't cull embryos on a whim or a genetic propensity for hangnails, because an IVF cycle typically results in only a small number of embryos to choose from (and sometimes only one, or even none). Parents who screened out embryos with various trivial genetic flaws would quickly run out of embryos and go home with no baby at all.

Screening for a particular disease is not a frivolous matter. While some might downplay a disease by calling "manageable", it's another story for those who have seen firsthand the suffering it causes their own parents or close family members, perhaps seeing what awaits in their own future.

Saleton seems to think the woman screening for arthritis just thinks it's too inconvenient to keep a bottle of ibuprofen handy, but her form of arthritis can cause fusion of the spine, may cause pain starting at 3 years of age, and has no treatment, other than painkillers and surgical joint replacement.

“My mother told me that the only worse thing than having cancer twice was having to give the gene to me.”

New York Times

But even if a woman could produce a hundred eggs in a cycle, in hopes of producing an embryo that meets a myriad of genetic requirements, PGD testing on a vast number of embryos for multiple conditions is simply infeasible. PGD is limited for several reasons: only one embryonic cell is available for testing, so only a few tests can be performed; analysis must be completed within 48 hours, because the embryo can't survive longer; and the cost is prohibitive. Adding multiple tests on dozens of embryos would send the normal PGD tab of around $3,000 soaring to maybe $30,000 or more, per cycle (on top of IVF costs).

So the only people in danger of sliding down this particular "slippery slope" are multi-millionaires with super-human egg producing powers.

Culling embryos

Another patient ... set out to scan his embryos for colon cancer and ended up chucking two more for Down syndrome. "You kind of feel like you shouldn't be doing it," his wife confessed.

Saleton gives us the impression that, were it not for the villian of PGD, all of these "chucked" embryos would go on to lead happy, healthy, lives, more or less. But again, this conflicts with the reality of IVF: extra embryos are created, and some are discarded. A woman usually hopes to conceive exactly one baby, and no matter how many children she would love to have, she cannot safely incubate a litter of 5 or 6 at once.

With or without PGD, a couple in an IVF cycle who winds up with 10 embryos must choose, typically, one to three to implant, and must discard (or freeze, or donate) the rest. In a case where some embryos must be selected, and some must be discarded, PGD is simply a tool used to select the embryos most likely to result in a successful pregnancy and a healthy baby.

Without PGD, embryos are selected after being examined under a microscope, and graded for quality. The "most beautiful" embryos are the lucky ones selected for implantation. But, because even though the healthiest-looking embryo may harbor devastating chromosomal abnormalities and with zero chance of survival, choosing embryos by sight alone is only a little better than a wild ass guess.

How is it that it is somehow moral to choose embryos by inaccurately predicting their future health based on their 3rd day "beauty", but immoral to choose embryos by accurately predicting their future health based on genetic analysis?

Taking a swipe at savior siblings

Another oft-criticized use of PGD is to select an embryo because it is a tissue match for an existing sibling, and the resulting baby becomes a donor to cure the sibling.

Once you start treating a child as a tissue bank, it's hard to stop. Last month, after a Swiss couple used PGD to pick a donor embryo for their ailing son ... the donor infant, having failed to provide enough cord blood, was subjected to a painful bone-marrow extraction as well.

Certainly, any person would be outraged at the idea of a helpless infant being tortured like a lab rat in order to rob its tissues. But actually, bone marrow extraction is performed under anesthesia, and although there can be some soreness and pain afterward, it goes away and the body swiftly naturally replaces the lost marrow; in the scheme of things it doesn't seem an enormous price to save the life of another person.

The issue, presumably, is that no matter how the scales tip when weighing saving a life against a harmless procedure, the baby cannot consent to that procedure. How often, I wonder, do people who are actually asked to be a bone marrow donor, and are able to give their consent, instead refuse? We know that people volunteer quite willingly to be bone marrow donors for perfect strangers, so it seems safe to assume that people usually step up to the plate when called upon by a family member. Certainly I wouldn't hesitate to be a donor even for my least favorite sibling. Second cousin, even. In a pinch I might even save a journalist.

Why then, would one assume on this baby's behalf, that rather than becoming a decent human being who would readily give his consent if he could, he will become a crass individual who would rather watch his sibling die than endure a few days with a sore hip?

Parents who seek to have a "savior sibling" have been vilified by the press as monsters looking to use a baby for spare parts. But if these people were really that heartless, they could easily choose a cheaper and easier route: just bury the first child and hop in bed and make a replacement. Instead, they have chosen a path that includes the exraordinary expense and inconvenience of IVF -- at a cost averaging $15,000 to $45,000, with no guarantee of a successful pregnancy. (And for those of us who know what it means to shed tears over an unsuccessful IVF cycle, try to imagine, for just a moment, what it must be like when a negative pregnancy test spells a death sentence.)

And beyond the birth of the savior sibling, there is still a matter of the bone marrow transplant for the ailing child, which involves a month-long stay in the hospital and perhaps a year of recovery. That is, if you're lucky, because there's a chance the transplant will be unsuccessful, and the child will die, or not be cured.

Why would anyone think that these parents, who are willing to go to such extraordinary lengths simply for the chance to save the life of a child, would view a second child as nothing more than a slab of meat? Wouldn't it be more reasonable to suspect that such parents would treasure a second child just as much as the first? More reasonable, perhaps, but not very sensational.

Better than sex? The growing practice of embryo eugenics
Slate.com

Clinical trial will measure the social effects of gender selection

Maureen — Thu, 27 Oct 2005 03:35:00 GMT

What is the social impact of parents choosing the sex of a child for family balancing? Researchers at Baylor College of Medicine in Houston have launched a study of 50 prospective parents who already have a child of one gender, and hope to use PGD to conceive a baby of the opposite gender. The study will look at the health of the babies and "social factors" as the children grow up.

Trial to measure consequences of predetermining child's sex
WLS-TV, Chicago ABC Affiliate
Sex selection clinical trial is launched
UPI
Local couples in study to pick baby's gender
Couples eligible for consideration must have one child, want another of the opposite sex
Click2Houston
Boy or Girl? New study allows parents to pick sex
NewsInferno.com
New U.S. clinical trials allow sex selection of human embryos
LifeNews.com
In-Vitro study lets participants choose baby's gender
Christian Broadcasting News
Trial aims to measure social effects of choosing babies' sex
Nature (subscription required)

Orchids: A play about PGD

Maureen — Thu, 15 Sep 2005 10:00:00 GMT

Residents of Vancouver and Toronto can attend a play about the ethical questions raised by PGD: "What is normal? Who should decide?"

Dr. Jeff Nisker [is] a Canadian PGD researcher turned playwright whose exploration of the moral minefields surrounding PGD and genetic testing can be seen in his play, Orchids, on this coming week.

Orchids
Dates and locations
All in the family: Genetic tweaking may be a part of our not too distant future
Toronto Sun

Bioethicist defends parents' right to choose their baby's gender

Maureen — Wed, 03 Aug 2005 11:45:00 GMT

Dr. Edgar Dahl, bioethicist and senior research fellow at the medical centre of Geissen University, Germany, argues that sex selection should be permitted in the UK. Based on his extensive research on gender preference among parents in many countries, Dahl refutes the common misconception that gender selection could lead to a sex ratio imbalance. He cites a survey which found that the majority of British couples would like to have an equal number of boys and girls, and the remaining couples didn't have any gender preference.

It is simply untrue that all people who would like to choose the gender of their children are motivated by the sexist belief that one sex is more valuable than the other.

Why I believe parents have the right to choose the sex of their children
Dr. Edgar Dahl

Baby Gender Mentor Article: Revolutionary foetus sex test raises eugenics fears

Maureen — Sat, 23 Jul 2005 16:44:00 GMT

Revolutionary foetus sex test raises eugenics fears
News Telegraph, UK

Anti-abortion groups in the UK oppose the Baby Gender Mentor.

A mother of 3 boys awaits her Baby Gender Mentor results to find out if her 4th child is a boy or a girl.

Interestingly, Acu-Gen, the makers of Baby Gender Mentor, have announced that a new test will soon be available to screen for severe chromosomal defects such as Down's Syndrome early in pregnancy. Unlike Baby Gender Mentor, which is an at-home test using only a few drops of dried blood to obtain fragments of the baby's DNA to determine gender, the Down's test will be performed in a regulated lab.

Article: Test Tube Perfection (Herald Sun, Australia)

Maureen — Thu, 21 Jul 2005 08:16:00 GMT

Article: Test tube perfection, Herald Sun, Australia

Quotes from the maladroit Father Bill Uren, rector of the Jesuit Theological College:

He denounced parents who "just want to create children after their own image".
What, exactly, kind of children should I want, then? I pretty much thought children in our "own image" was the natural course of events.

"What right have we as beneficiaries of the birth lottery to rig it for the next generation?" he said.
Many people feel it's not a right, but a responsibility to try to give a better life to the next generation.

"We are commodifying children -- making them into a supermarket product you can just pick off the shelves."
Ha, ha, Father Bill. That commodity line always cracks me up. Having a baby, in case you haven't noticed, involves being pregnant for an extended period of time and a fairly exigent birth process -- not to mention adding the expensive and harrowing experience of IVF into the mix, if that is needed. I don't know where you do your grocery shopping, but the last time I checked, grabbing an item off the supermarket shelf wasn't all that taxing.

He warned that any sex selection would disadvantage females as parents would choose a male as their first child and heir.
If Father B had a) looked at any research on gender preference, and b) looked at preferences for Australia, he would have found a good deal of evidence that non-Asian countries show a strong desire for children of both genders; and that among those seeking to use sex selection, more are hoping to have a girl than a boy.

Early gender DNA test offered by Paragon Labs

Maureen — Tue, 19 Jul 2005 04:23:00 GMT

Article: Early sex selection test raises ethical concerns (CBC News, Canada)

No, it's not Acu-Gen's Early Gender Mentor. Paragon Genetics, a DNA testing lab offering paternity, infidelity, and forensic testing, has begun offering what is now called "non-invasive" prenatal testing, by obtaining the baby's DNA through a sample of the mother's blood. A gender determination test is also available.

The CBC article makes the usual unfounded assumption that anybody who got their hands on such a test would want to use it to abort girls. For the 100th time -- please say it with me -- Westerners do not share the Asian aversion to daughters. There is significant and growing evidence that in the US and Europe, parents who hope to choose their baby's gender are more often seeking a daughter.

Article: Birth of first "Savior Sibling" conceived in the UK with PGD

Maureen — Tue, 19 Jul 2005 04:21:00 GMT

Article: 'Savior sibling' born to Fletcher family (BioNews, UK)

I've written before about the Whitakers, a family with a seriously ill son who could be cured by a bone marrow transfusion. They hoped to use PGD to have a 'savior sibling' -- using an embryo selected because it was a tissue match for their older son. However, the UK's HFEA (the aptly called "watchdog" organization that decides who can do what with fertility treatments in the UK) denied the Whitakers the use of PGD on the grounds that only an existing child would benefit, not the baby who would be born as the result of PGD.

The HFEA's convoluted logic was much criticized (or criticised, it being England), as you might expect with a storyline like this:

Mr. & Mrs. Whitaker: Dear HFEA, we'd like to use PGD.
HFEA: Well, we don't like it. You'd better have a good reason.
Whitakers: To save the life of a child.
HFEA: Not good enough. Next!

Well, all that's old news. The UK has changed their stance to allow PGD for savior siblings! And, the first baby to result from this medical blessing has been born to the Fletchers in Belfast. Their young son suffers from a very rare disease Diamond Blackfan Anemia, or DBA (just like Charlie Whitaker). Using PGD, the Fletchers conceived a daughter to be a tissue match for a bone marrow transplant to hopefully cure him. (In case you're worried about this procedure hurting the baby, the cord blood can be used.)

UK: Why the critics got it wrong over 'designer babies'

Maureen — Sun, 27 Mar 2005 12:01:00 GMT

Why the critics got it wrong over 'designer babies'
Scottish News

Commentary on the report on reproductive technologies issued by the UK's House of Commons select committee on science and technology concludes, "the report certainly is radical, but in a positive not a negative sense".

UK: The law is halting the birth of a new era

Maureen — Sun, 27 Mar 2005 11:53:00 GMT

The law is halting birth of new era
Scottish News

Dr. Ian Gibson, chairman of the UK's House of Commons Science and Technology Committee, comments on changes needed in the function of the HFEA, which regulates fertility treatment in the UK. An excerpt from this excellent article:

The 1990 Act has an infamous clause, which states that "a woman shall not be provided with treatment services unless account has been taken of the welfare of any child who may be born as a result of the treatment (including the need of that child for a father) and of any other child who may be affected by the birth".

Looking after the welfare of the child sounds like a good thing, but in effect it enables the state to decide who is a fit parent. We decided that this was discriminatory.

It means that infertile couples’ lives are scrutinised in a way that fertile couples would regard as a gross invasion of their privacy.

It's a Boy! We made sure of it.

Maureen — Fri, 26 Nov 2004 02:57:00 GMT

It's a Boy! We made sure of it.East Bay Express

Explores the "ethical can of worms" posed by MicroSort and family balancing: the slippery slope, the nation of little sisters, and gender imbalance in Asia. The author forsees 5% of the population using MicroSort -- that's 14 million babies each year, compared to the 419 born over 8 years so far. I'm sure MicroSort stockholders are thrilled.