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Thursday, September 21, 2006

You Have Got To Be Kidding

So if news comes in threes, here is your third article about infertility this week. Complete with requisite twisting of the facts for maximum frustration by the infertile reader.

The article is about PGD and follows below. With the article in black and my comments in red. Why red? Because I'm so freakin' angry. And yes, Carolyn, this is another reporter who needs an email sent to his inbox explaining how the media has a duty to present--not twist--facts.

VITAL EVIDENCE
Increasingly, Couples Use Embryo Screening
Thursday, September 21, 2006; Page A02

More and more couples are turning to an embryo-screening technique that allows them to choose the genetic makeup of their children, according to a survey released yesterday in the online edition of the journal Fertility and Sterility. (Yes, it allows them. Yes, it is possible. No, that is not the primary way it is being used EXCEPT in cases where you are screening for a disease that runs in a specific sex).

Some (note the extremely scientic word "some") use the test so they can give birth to a child genetically similar to a sick sibling in need of a bone marrow transplant from a matched donor. (How many--give a percentage. Some could be under 1% or some could mean 50%. If this is truly noteworthy, give the specific number of siblings created this way). Others are screening for genetic abnormalities, including some for which the test has not been proved useful. Still others are using it to get a baby of the sex they want. (Again, how many others? How many people have truly gone through IVF and PGD and paid the thousands and endured the treatments in order to get a specific sex of a child that is NOT linked to preventing a genetic illness)

Pre-implantation genetic diagnosis, or PGD, starts with the creation of a "test tube" embryo. At the eight-cell stage of development, one cell is removed, apparently (apparently? This is scientific writing?) without causing lasting harm, for testing. Embryos that pass the test are allowed to develop further and are transferred to a woman's womb. Others are frozen or discarded (discarded--with the twist being that they want the reader to believe that perfectly healthy embryos are being discarded).

The survey of 186 U.S. fertility clinics, conducted by the Washington-based Genetics and Public Policy Center, found:

· About 75 percent of fertility clinics now offer PGD.

· About 3,000 PGD screenings were performed in 2005 -- in 5 percent of all in vitro fertilization procedures.

· Sixty-six percent were done to screen out embryos with chromosomal abnormalities that were feared because the mother was older or had a history of in vitro fertilization failure or miscarriage caused by chromosome problems -- even though PGD has not been deemed a reliable test for these problems. (Truly, if it's not reliable at all, why use the technology? Oh, or are you saying that like all things medical, it's not a perfect treatment with 100% reliable results? Sort of like cancer drugs. Works for some people, not for others. So...I guess by your logic, we should throw out everything that's not 100% reliable. All chemo drugs should be dumped out right about now...)

· Forty-two percent of clinics doing PGD offer sex selection, and 9 percent of PGD is for this purpose. (Twist, twist, twist. Yes, sex selection in order to not transfer embryos of a certain sex if that sex is going to be carrying the genetic illness)

· Twenty-four percent of clinics offer PGD to get a match for a sibling in need of a transplant, about 1 percent of all PGD. (Offer it--it's not necessarily utilized. But they offer it. Twisty twister twisterstein).

· Twenty-one percent of PGD clinics were "aware of" errors having been made -- including children born with the problem that was supposed to have been screened out. (Because, as stated before, it's medicine. And medicine is art. And sometimes treatments fail. And sometimes tests fail. And it's a matter of not being able to control all circumstances because you're not operating in a vacuum. And is it an error if it doesn't work? I don't know. If I had cancer and the treatment didn't work for me, I wouldn't call it an error on the medication's part. Or my doctor's part. I would call it the best try. Because medicine is not like other branches of science with highly replicable results).

-- Rick Weiss

Oh...Rick. Ricky. Your article made me so angry this morning. What was its point? To scare the public about the far-reaching possibilities of PGD? To help the public understand the devestating process many couples are going through in order to achieve pregnancy? Where are the articles talking about how scary it is that toxic medications exist that could essentially poison a body? Because when new chemotherapy drugs come onto the market, it's cause for celebration and hope. But when a new fertility technology or mental health drug comes onto the market, it's cause for many articles warning readers about how dangers or unethical nature of these new advances.

Am I pro-PGD? Of course. Is it perfect? No. But show me something in medicine that's perfect, 100% of the time. This is what I can show you--a couple who has endured countless pregnancy losses who is now pregnant due to PGD. And...well...like I borrow from Martha Stewart, it's a good thing.

7 comments:

Katie said...

Amen, amen, amen!!!!!!!!! I hope you send this article to this writer. Oy.

Tara said...

On the news here in the Philly area there was a news report a few months ago (a 30 second blip) that said that some parents were using PGD as a way to cure their unborn children of genetic diseases. Yes, CURE. As if tiny little operations could be done on tiny little cells with tiny little scalpels. And they left it at that. It was really unbelievable. I wonder how many people went rushing to their doctors to talk to them about PGD.

C said...

I think you've got all the letter-writing bases covered on this one, Mel.

Gah. I feel sick after just reading that article. What's so hard about writing an article that accurately characterizes a procedure like PGD or being infertile in your 20s? It's not like there aren't interesting angles to either of those stories, yet time and again reporters choose to focus on one sensational (and typically inaccurate) aspect of the story that ends up hurting those of us who are living with infertility.

TeamWinks said...

All for forwarding that to the author!

KE said...

Wow. So much for unbiased journalism. Does this person have any idea what kind of agnoy the need for PGD can create? It's not like it gives you a menu where you can order the exact baby you want. Articles like this really demonstrate why infertility and ART are so misunderstood by the general public.

squarepeg said...

I'm surprised at the Post! The AP coverage of the story was much better, though not perfect:

http://tinyurl.com/ob28a

Might be interesting to compare and contrast. I actually appreciated the fact that they state "For the most part, couples are screening embryos for the right reasons — to avoid passing on dreadful diseases" But you are right - it needs to be clarified that even when the reason is personal preference, PGD is being used 99.9999 percent of the time only by people who already require IVF to conceive.

Fertiles get to choose when and how many babies to have - even on a whim or by accident. So if infertile couples who are forced to go through IVF in order to have a biological child choose exploit the arduous task of conception so that they may have a child of a preferred sex, WHO CARES? For crying out loud, we deserve to get SOMETHING nice out of this process! (aside from the baby, obviously)

Bea said...

I briefly used to read the blog of an avid pro-lifer who used to discuss articles like this an gush on about the evils of procedure X. I had to stop reading when she asked me if I would agree that PGD should be banned because it is "not a necessary procedure for the couple to become pregnant".

Now, I didn't let this one go.

I explained, quite politely, that if you are someone with a chromosomal disorder which gives you a high (above 50%, say?) chance of miscarriage say, around week eight to twelve, then maybe you might have a healthy baby without PGD before you hit menopause but probably not, plus how many of your babies will die, and how much will you suffer (physically and emotionally) in the meantime?

So how can she say there are couples out there who don't *need* PGD? That's just barbaric - and she calls herself pro-life. She's an extremist freakcase, is what she is.

Then I had to walk away, because I was too exhausted to fight on at the time. Sorry team - but she really was a nutter, I think a lost cause.

Bea