By Madison K. Kilbride

When prospective parents learn that they’re at risk of passing a genetic condition to their future children, they’re often very concerned. Currently, there are two ways to ensure that one’s biological children do not inherit a hereditary condition. The first is to conceive naturally, use prenatal diagnosis to test the fetus for genetic abnormalities, and if the fetus tests positive for a genetic condition, terminate the pregnancy. For a variety of reasons, many people find this approach unacceptable. The second option is to create embryos through in vitro fertilization (IVF) and then use a technique called pre-implantation genetic testing (PGT) to screen the embryos for genetic conditions prior to implantation.

While a number of studies have reported that prospective parents who are at risk of passing on a genetic condition by and large prefer IVF-with-PGT to conceiving and possibly terminating a desired pregnancy, IVF-with-PGT nevertheless remains inaccessible to the majority of American patients. The reality is that, for many prospective parents, IVF-with-PGT is simply cost-prohibitive. In the US, a standard IVF cycle costs about $12,000, a price that doesn’t even include fertility medications (another $3,000–$5,000) or the PGT procedure (another $3,000–$6,000). And if one IVF cycle with fertility meds and PGT isn’t already expensive enough, many women have to undergo multiple cycles to achieve a successful pregnancy. As things stand, only the most privileged individuals have the option of managing their reproductive risk through IVF-with-PGT.

Despite these high costs, insurance coverage for IVF-with-PGT is very limited in the US. This lack of coverage is particularly concerning given the ever-increasing accessibility and affordability of genetic testing; not only does every major insurance provider cover genetic counseling and testing for individuals meeting certain criteria, genetic testing is also widely available through direct-to-consumer platforms (e.g. 23andMe and Color Genomics). The upshot is that prospective parents who learn about their genetic risks and, by extension, those of their future children, may have limited options for risk management in the context of reproductive decision making.

In my article, I tackle the lack of insurance coverage for IVF-with-PGT, a topic that has largely been ignored by scholars. To argue for expanded coverage, I situate my discussion within the existing US insurance framework. In particular, I focus on the US Centers for Medicare and Medicaid Services (CMS) notion of “medically necessary care,” defined as the set of “[h]ealth care services or supplies needed to diagnose or treat an illness, injury, condition, disease or its symptoms and that meet accepted standards of medicine.” Given CMS’s definition, I show that IVF-with-PGT ought to count as medically necessary care. Moreover, I argue that, to the extent that IVF is similar to other types of services that are routinely covered by US insurance providers, the current system is inconsistent with respect to what is and isn’t covered by insurance.  In short, I call for like cases to be treated alike—starting with expanded coverage for IVF-with-PGT.

Paper title: In Vitro Fertilization with Pre-Implantation Genetic Testing: The Need for Expanded Insurance Coverage

Author: Madison K. Kilbride

Affiliations: Department of Medical Ethics and Health Policy, Perelman School of Medicine at the University of Pennsylvania

Competing interests: The author declares no competing interests.

Social media accounts of post author(s): Twitter @MadisonKilbride