Gender Selection News : PGD

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

Run for the hills, the designer babies are coming!

Maureen — Wed, 24 Aug 2005 12:00:00 GMT

Britian is only a "hop, skip, and a jump" away from the nightmare vision of social engineering portrayed in Aldous Huxley's science fiction classic "Brave New World", according to the chairman of the British Medical Association Welsh Council.

As the UK government considers whether to lift the ban on gender selection for family balancing, Dr. Tony Calland warns that allowing parents to use sex selection on non-medical grounds puts us on the dreaded "slippery slope" toward Huxley's science fiction dystopia, where the inhabitants are standardized, laboratory-grown clones, pre-programmed to be members of the upper class or desgined to be worker drones.

"There are a lot of people who will see any loosening of this Act as a further step on the slippery slope - the end point being where you decide that you want a blonde-haired, blue-eyed girl who is bright and good at tennis. That takes us down a road which, to my mind, is Brave New World territory. ... We are now a hop, skip and a jump away from it and that makes me very uncomfortable."

Although I'm quite a science fiction fan myself, just for the heck of it let's check out the science facts.

Scientists do not know which gene combinations are responsible for complex traits like intelligence, athletic ability, leadership, beauty, and so on.
Scientists cannot alter an embryo's genetic makeup to produce a desired trait, such as eye color, or even to correct a defect, such as having a disease gene. So far, this has been accomplished only in laboratory animals, and not entirely successfully. Many attempts at genetic modifications introduce unwanted mutations with extreme developmental consequences, even death. We are not a "hop, skip, and a jump" away from using this on humans experimentally, much less on a widespread basis.
Parents cannot design a baby with many desired traits by genetic screening. Although you have seen dozens of news stories about so-called "designer babies" like Jamie Whitaker, the term design is actually incorrect. It's only used because the media knows it's an attention-grabber.

In fact, scientists can merely select an embryo which already has a desired trait. The embryo is still the natural, unaltered offspring of the parents. Genetic screening can do no more than simply identify whether an embryo has a desired trait or not.

So what would stop parents from writing a laundry list of desirable traits for their baby, and selecting only embryos that match?

Parents are limited simply by the number of their embryos available to choose from. As anyone who has been through IVF knows, during each IVF attempt, only a very limited number of viable, healthy embryos can be produced. It just isn't feasible to screen for several "designer" characteristics. Dr. Robert Jansen explains it very well:

First, no gene (unless both parents have it) is going to appear in more than, on average, half the embryos.

Second, how the different genes (all 32,000 or more of them) assort with each other is totally out of our hands, even in an IVF lab. In a restricted number of embryos, as is always the case after egg retrieval and IVF, probably much less than half will even be normal (in terms of having the normal number of chromosomes); of these, on average no more than half will have one wanted gene, no more than a quarter will have two wanted ones, an eighth will have three ... and so on. If you want to get too picky, you quickly run out of embryos.

As for the "slippery slope" -- although gender selection using MicroSort and PGD has been available in the US for a number of years (I used MicroSort 5 years ago), I certainly haven't noticed any tendency for Americans to give up procreating the good old fashioned way.

(Note to Dr. Calland: War of the Worlds isn't real, either; please do not be alarmed.)

Designer babies 'close to reality'
Wales News
"Designer Babies?" Hardly. The near future: a slope that's not as slippery as it looks
Dr. Robert Jansen, from the book Getting Pregnant
Human Germline Genetic Modification <-- Science Fact
Genetics & Public Policy Center (Johns Hopkins University)
Brave New World <-- Science Fiction
by Aldous Huxley (Read the entire book online)

Miracle cure thanks to PGD and 'savior sibling'

Maureen — Tue, 16 Aug 2005 12:00:00 GMT

Hallelujah! Charlie Whitaker, a toddler ill with a rare and life-threatening blood disorder, has been pronounced cured after receiving a transplant of the umbilical blood from his brother Jamie. Jamie was conceived using PGD, a technique which uses genetic screening to choose a tissue-matched embryo. The Whitakers were forced to travel from Britian to the US for PGD treatment, after the UK government heartlessly refused to permit the use of PGD in their case.

May the Whitaker family continue to enjoy the blessing of health and every happiness!

My little brother was born to save my life
Charlie, 6, gets health all-clear in medical first
UK Mirror

Smoking fathers are less likely to have a son

Maureen — Wed, 10 Aug 2005 12:47:00 GMT

If your husband is a heavy smoker, you may be much less likely to have a son. Men who were smokers were much less likely to produce male embryos, in a study of couples using IVF with PGD (preimplantation genetic diagnosis):

The men's semen samples were analyzed to determine the X:Y ratio, the number of boy-producing compared to girl-producing sperm. All samples, smokers and non-smokers alike, were found to have an equal amount of X and Y sperm.
The sperm samples were then prepared for fertilization using the swim-up technique, which separates the healthiest, most motile sperm cells from abnormal or slow-moving sperm cells.

Among smokers, the healthy portion of sperm was found to have a higher proportion of X sperm.

The resulting embryos were analyzed using PGD, and here are the results:

53% male embryos were produced by non-smoking fathers.
32% male embryos were produced by smoking fathers.

Smoking habits of parents and male: female ratio in spermatozoa and preimplantation embryos
Human Reproduction

UK's first savior sibling is a 'perfect match' -- and parents are thrilled to have a girl.

Maureen — Mon, 08 Aug 2005 12:00:00 GMT

A few weeks ago I mentioned the birth of the UK's first savior sibling -- Jodie Fletcher, born after PGD was used to select embryos tissue-matched to her 3-year-old brother, Joshua. Joshua suffers from a rare blood disorder, and despite extensive medical treatment is often in severe pain. His only hope for a cure is from a blood stem cell transplant from a tissue-matched donor.

Genetic tests have just revealed that the Fletchers' new daughter, Jodie, is a perfect match. Jubilant at the news, Joe Fletcher says they are delighted to have a"healthy wee girl".

Jodie's dad, Joe, revealed that of the nine embryos fertilised - just one was female.

"The odds were so against having a girl," he said. "Julie always wanted a girl - we have two boys. But we are both just glad the baby is healthy. That is the important thing."

Designer baby is a perfect match; New hope for sick tot Joshua
Belfast Telegraph
'Savior sibling' perfect genetic match for brother
BioNews

Boy or girl: Can you choose?

Maureen — Tue, 02 Aug 2005 21:21:00 GMT

This American Baby magazine feature article is "a roundup of what you can try at home -- and what's involved in going the high tech route". The article includes a few quotes from me (Maureen) and a mention of this Web site.

Boy or girl: Can you choose?
American Baby Magazine

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.

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.)

Gender Selection More Possible, But Controversial

Maureen — Tue, 26 Apr 2005 03:00:00 GMT

Gender Selection More Possible, But Controversial
ABC News

Lengthy article covers MicroSort and PGD and compares medical gender selection to home kits like GenSelect.