September 2, 2006

You Down With PGD? No "Wait & See"

The NY Times has a long article on the expanding frequency and breadth of preimplantation genetic diagnosis, or P.G.D. PGD involves removing a cell from an 8-cell embryo for genetic screening. Then if it passes, that embryo is implanted using traditional IVF techniques. The procedure costs up to $25,000 on top of the IVF treatment.

Previously, PGD had been limited to screening embryos for genetic disorders where death, severe disability, or untreatable disorders are all but certain, things like cystic fibrosis or Huntington's disease. In those situations, it's often covered by insurance. But that's the old days:

Already, it is possible to test embryos for an inherited form of deafness or a mild skin condition, or for a predisposition to arthritis or obesity. Some clinics test for gender. As scientists learn more about the genetic basis for inherited traits, and as people learn more about their genetic makeup, the embryo screening menu and its array of ethical dilemmas are only expected to grow.

“From a technology perspective we can test anything,” said Mark Hughes, director of the Genesis Genetics Institute in Detroit, who is performing P.G.D. this month for two couples who want to avoid passing on a susceptibility to breast cancer. “The issue becomes what is considered serious enough to warrant such testing and who decides that.”

The process is also difficult and expensive. P.G.D., which requires in vitro fertilization, can cost tens of thousands of dollars. While insurance companies often pay for the more traditional uses of the procedure, they have not done so for cancer-risk genes, fertility experts say. The barrier to affordability, some critics fear, could make preimplantation diagnosis for cancer risk the first significant step toward a genetic class divide in which the wealthy will become more genetically pure than the poor.

Well, I wouldn't worry too much about that. If history teaches us anything, it's that pursuits of genetic purity almost never result in any undesirable or unforeseen negative consequences.

But seriously, parents-to-be who know of genetic predispositions in their family, like breast cancer, or colon cancer--like the Chicago dad whose story leads off the article--are only now beginning to discover PGD even exists. For young families, that means largely uncharted ethical and health territory.

Seeking Healthy Children, Parents Cull Embryos [nyt]

update: the new headline for this article: "Couples Cull Embryos to Halt Heritage of Cancer"

12 Comments

Where are you getting the $25K figure? That's sounds way out of line to me. Perhaps a typo? Anybody know? The one site I can get online says $4K to $7.5K Shady Grove, the best in the country, only charges an extra $4,500 for Shared Risk PGD, which covers up to 6 cycles.

{it was in the article. "The out-of-pocket costs often exceed $25,000..." aha. "...depending on how many in vitro cycles are required." That might be the all-in cost for PGD-IVF. But I thought IVF was more expensive than that, no? -ed.]

That $4k-$7k figure from Shady Grove is almost certainly just the cost of PGD, and doesn't include the cost of IVF.

It is also how you choose your baby's sex in sex selection.

[true enough. PGD got a fair amount of discussion in NY Observer article in July, as did the less controversial method of MicroSorting sperm before fertilization. Very popular on the Upper East Side, apparently. And that article puts PGD/IVF at $17-20k/cycle, vs $3400 for microsorting. -ed.]

...we delayed starting a family because we were hoping to use this technology -- we have the colon cancer gene. Unfortunately, no amount of genetic testing could locate the defective gene (some 20% of people with F.A.P. have this problem), and so were unable to proceed. We still have regrets -- we won't know if our 2 children have inhereted the gene for years to come -- until there is a better genetic test to pinpoint the location of the defective gene, or until they start exhibiting systems. Oh well.

I left out a period in my previous post which must be causing some confusion. Since I know best about Shady Grove, that's what I will cite. One IVF cycle at Shady Grove is $9K, plus another $3K in drugs. Based on a figure of $4,500 for PGD for 6 cycles, I would estimate that PGD is somewhere between $500 - $1,500 above the $12K for IVF.....

The $4-$7.5K figure is what I found on the internet when I briefly searched.

I must've missed the $25K figure in the article, but it seems pretty wrong to me. Now the article was citing Genetic firms that ...perhaps are charging couples much much more than infertility clinics...because they can....

No, the cost of a single round of IVF is around 12,500. if you opt for a global/ risk sharing plan these usually run around 30,000 for multiple tries. If you get pregnant after one try or 5 the global cost is the same.

Microsort cost 5000. Plus the cost of travel to Fairfax or the CA facility to make an , er, direct deposit.
PGD 3500 more or less for an accounting of the chromosones in each embryo and basic testing for CF etc. IF there are specialized testing that you want, usually it cost 500-750 per test (not per embryo) to set up that test for you.

I hope this is helpful.

[so do I. I've never come across any of this stuff laid out very clearly or in one place. -ed.]

BTW, since most clinics are a cash business (very few things are covered by insurance) any clinic will gladly provide you with a "menu" of services and costs. Also prices vary regionally with NYC and SF of course having higher cost than areas like Atlanta.

The actual cost of PGD itself is only $2500/cycle if you go through Mark Hughes -- but that's just the testing itself. PGD obviously requires IVF, which can cost between 10,000-15,000/cycle and some people pay $25,000 up front for a guarantee of 3 cycles if the first one(s) don't work. The process also requires ICSI -- intra-cytoplasmic sperm injection -- which costs $2000/cycle and is often also not covered by insurance unless the sperm is coming from someone with low sperm count.

I have a family member who has retinoblastoma. There's a 50% chance any child of his will get it but until now no way to lower the risk. This kind of gene mapping and planned pregnancy is what he's been waiting for all his life.

My wife and I went through PGD last year to avoid breast cancer in our children. One of us has the BRCA1 gene mutation and has lost 6 members of our immediate family to this awful disease. We selected a laboratory in Michigan (Genesis Genetics) because they had, by far, the most experience in PGD of anyone we contacted (they invented PGD). We talked on the phone with Dr. Mark Hughes at Genesis and he was very helpful. We then selected an reproductive clinic for the IVF. My wife and I have insurance through our jobs, and both Aetna and Blue Cross agreed to pay for almost all of our care. Dr. Hughes and the IVF doctors wrote letters and we did not have any problems. While at the clinic we met another couple doing PGD for colon cancer. They said that their insurance paid for the IVF but not the PGD (which cost $2500 at the same laboratory we were using). Our new daughter was born in December and we are thrilled to know that she will not have this disease. Nor will our grandchildren. This is truly incredible medicine. We do not believe in abortion and were afraid to have kids who might suffer like so many members of the family have done. It isn't for everyone, but it is worth consideration. We are very happy parents.

hi i wanna know the exact rx cost for microsort and PGD(including IVF and all others tests,,plus taxes),,,,can somebody help me....plz...thanks in advance

can u plz tell me abt cost of PGD in total and the phone no. of doctor

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