Are Infertility Patients & Their Children Guinea Pigs?

Dawn Davenport

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The lack of research on health of children conceived by IVF and fertility treatments hurts children and the parents who love them

The lack of research on health of children conceived by IVF and fertility treatments hurts children and the parents who love them

I read a lot of research since one of the things we do here at Creating a Family is to summarize (read: translate into regular English) research for the folks who really need to know—the infertility patient. Most research reports are pretty cut and dried—”just the facts ma’am”, with little editorializing, especially on controversial topics. So I was  little taken aback last week when I read in a summary of research on the long term effects of IVF on children, the following assessment on the lack of follow up research on the children conceived.

[M]ultiple pregnancy [is] the strongest determinant of adverse outcome in IVF births. However, we can not overlook that there may be other factors that contribute to morbidity in IVF-conceived children. Many in the reproductive community consider it to be an act of self-sabotage to pursue the association of adverse outcomes and IVF. We suggest it is the opposite. …. An organ transplant center that does not know the rejection and survival outcome of its patients would be widely, and appropriately, criticized. [emphasis added]

This criticism of the lack of long term studies of the health of children conceived through fertility treatment reminds me of an article in The New Republic,How Older Parenthood will Upend American Society“. I thought the article overstated the research to date and was overly simplistic, but I was struck by the following: The author heard from many researchers that fertility treatments were a “natural experiment” conducted on an “unthinkably large population” of children conceived through IVF and other infertility treatments. And a natural experiment where we don’t yet know the outcome.

Epigenetics is also forcing medical researchers to reopen questions about fertility treatments that had been written off as answered and done with. Fertility doctors do a lot of things to sperm and eggs that have not been rigorously tested, including keeping them in liquids (“culture media,” they’re called) teeming with chemicals that may or may not scramble an embryo’s development—no one knows for sure. There just isn’t a lot of data to work with: The fertility industry, which is notoriously under-regulated, does not give the government reports on what happens to the children it produces. As Wendy Chavkin, a professor of obstetrics and population studies at Columbia University’s school of public health, says, “We keep pulling off these technological marvels without the sober tracking of data you’d want to see before these things become widespread all over the world.”

Most of the research that I’ve read or that we’ve discussed on the Creating a Family show if fairly optimistic, although it’s hard to generalize. I recommend this recent Creating a Family show as a good summary of what we know and what we don’t know about how IVF affects the babies conceived.

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A good example, however, of the problem with the practice of reproductive medicine getting too far ahead of the research is with intracytoplasmic sperm injection (ICSI), which was originally developed as a technique to be used in combination with IVF for severe male factor infertility. ICSI has become almost a routine part of IVF treatment (up to 50% nationally and considerably more at some infertility clinics) regardless of the cause of the infertility. Research is just now beginning to uncover that the children resulting from in vitro fertilization with ICSI are more likely to have birth defects. The wide spread acceptance of this procedure was way ahead of the research.

What’s an Infertility Patient to Do?

I’m not sure what infertility patients are supposed to make of all this. They are truly stuck between a rock and a hard place. No one wants to be on the cutting edge of medical science. In order to get pregnant, they have to rely on the expertise of infertility doctors, and trust that their doctors are making good choices, not just for the immediate conception, but also for the long-term health of the child conceived. And yet doctors repeatedly tell me that patients often push for more tests, more advanced treatment, and most dangerous of all, more embryos to be transferred. By far, as we’ve said many times, the greatest risk for children conceived through fertility treatments is being born a twin (or more). As a general rule, all patients, including infertility patients, should be wary of any medical intervention and opt for the least invasive treatments possible. And for heaven’s sake, infertility patients must understand the risk of twins and stop pushing for an instant family.

Should IVF Kids be Registered?

One of the greatest hindrances to long-term research in the US is the lack of a registry of births conceived through fertility treatment. While infertility clinics have to report on their pregnancy and live birth rate, no one is required to track how these children develop. Researchers often have to go to other countries that do have a registry to do this long term developmental research.

Interestingly, I’ve discussed the need for a registry of children conceived via IVF and other fertility treatments with infertility patient advocates, and was surprised by the strong opposition of some.

  • How our kids were conceived is no one’s business.
  • Have you given any thought to how a registry will be used against them in the future?
  • The government already has too much information on us. More information in governmental hands would discriminate against my child.

Sigh, proof yet again that there is no such thing as the perfect, pain free solution to any problem.

Who Will Take the Lead?

I fear what will happen to infertility treatment unless the medical and patient advocacy community take the lead in doing the research and asking the hard questions. As the doctors said in the research summary I quoted at the beginning, In vitro fertilization and adverse childhood outcomes (summarized here):

If we do not ask these difficult questions, and seek these challenging solutions, investigators from other disciplines will do so, potentially without an understanding of the complexity and rapid changes that have led to the practice of IVF today. As such, it is possible that negative findings may be exaggerated or misinterpreted. Such reports are quickly disseminated by media, often superficially, resulting in harm to the field of reproductive medicine, and cause anxiety and confusion in the couples we treat.

Amen!

Would you oppose having all children born via IVF and other infertility treatments on a registry? Would it be possible to protect identities? Is it necessary?

P.S. To read summaries of the latest research in infertility, check out the Creating a Family Infertility Research page.

Image credit:  Kurosawa Michiyo

30/07/2013 | by Dawn Davenport | Categories: Blog, Infertility, Infertility Blog | 0 Comments



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