A new report by the European Society for Human Reproduction and Embryology shows that there are now five million people worldwide who have been born using in vitro fertilization (IVF). As an IVF baby myself, with my name purportedly on a plaque on the walls of Alta Bates Hospital for being one of its first, this seems like a good moment for me to look at how the 34-year-old technology has evolved.
Though the Catholic Church still insists that IVF is a “gravely evil act,” it has become more or less normalized in many countries. Its success rate has stabilized; around one third of implanted embryos result in a live birth, and the probability of conceiving twins has dropped below 20%. These successes have been vastly important for helping infertile and lesbian couples and single mothers create biologically related families.
But some IVF-related practices continue to spark widespread concerns. One of these is preimplantation genetic diagnosis (PGD), an embryo screening technique used to prevent the births of children with specific genetic characteristics. Regulation of PGD varies throughout the world. At one extreme, Italy currently bans all forms of IVF. At another, in the United States, PGD is not regulated at all, so decisions about its use are left to individuals and fertility clinics.
In England too, both IVF and PGD are used extensively. But there, the Human Fertilization and Embryology Authority has constructed a list of 210 conditions that it deems “sufficiently serious” to warrant the use of PGD. The list has grown dramatically; it has nearly doubled since January 2010 and now includes both severe conditions and the presence of genes that suggest an increased susceptibility to develop a condition.
PGD was developed more than 20 years ago, and was at first used to detect embryos affected by inherited diseases such as cystic fibrosis and Huntington’s disease. But it was quickly applied to testing for other genetic variants, including those that lead to being “pre-sick.” Testing for the BRCA1 and BRCA2 genes, associated with an elevated risk of breast and ovarian cancer, for example, falls into this category. This application has been much more controversial, as recent news from Australia attests.
How should we evaluate the use of PGD for genes like BRCA1 and BRCA2, when their presence doesn’t mean certain disease, and their absence doesn’t ensure that cancer won’t develop? And even when PGD doesn’t find risk-heightening genes, the resulting child may still have them, since the test doesn’t identify all the mutations.
Does the ability to know the genetic specificity of each embryo create a moral imperative for parents to terminate a pregnancy when a condition on a list like this is detected? From a very different perspective, do such practices push us into a new form of eugenics? Does it make sense to pressure parents to produce a perfect baby, when the way that genes determine health is still so imperfectly understood? How can we determine that gene mutations produce lives that are not worth living? What does that mean for the millions of people alive today who carry such “imperfections”?
Fertility clinics are promoting PGD without much consideration of these sorts of questions. The Sher Fertility Institute, for example, recommends the use of PGD in order to choose more “chromosomally normal” embryos for implantation, but what it counts as “normal” is hard to pinpoint, and cannot be understood as medically defined with the clinic providing embryo sex selection in the name of “family planning.” The website of Michigan-based Genesis Genetics Institute, “the leading global provider of preimplantation genetic diagnosis,” states that it does not test for “trivial traits,” but claims to add to a very long list of conditions “every week.”
As we evaluate the ways PGD is being used, it’s important to include the experiences of families that opt for it. The Kingsbury family, for example, has suffered for generations from an inherited genetic mutation that causes colon cancer, which has led to many deaths. Chad and Colby Kingsbury used PGD to avoid this fate for their daughter. The decision was not simple; of course they had loved their many relatives afflicted with the disease, yet they used this technology to reject every embryo that had the same defect.
I owe my life to IVF and I am blessed to have had good health thus far. Five million IVF babies certainly represent a landmark for the technology. But as the technique is used increasingly for selection rather than infertility, we’ll need to remain mindful of its risks and shadows.
Previously on Biopolitical Times:
• An IVF Groupon?
• Nobel Award for IVF Sparks Speculation
• UK's HFEA Lowers the Bar, Again
Posted in Assisted Reproduction, Bioethics, Disability, Egg Retrieval, Genetic Selection, Jessica Cussins's Blog Posts, Other Countries, Reproductive Justice, Health & Rights, Sequencing & Genomics, Sex Selection, The United Kingdom, US Federal
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