Cork Fertility Centre in Ireland recently announced what they are calling the first successful birth of a baby screened for cystic fibrosis (CF) in the country. Lisa Cooke and Patrick Mullane are both carriers of the genetic condition and wanted to ensure they didn’t have a child with CF. In order to do so, they went to Cork Fertility Center, one of two sites that performs In Vitro Fertilization with Pre-Implantation Genetic Diagnosis in Ireland. And their request was granted. One child, no CF, was born.
Pre-Implantation Genetic Diagnosis or PGD involves creating embryos for a couple who wants to avoid passing on certain genes to their children. In this case, the couple each carry one gene for CF. They have a 25% chance that each of them would pass their copy of the gene to their child, and that child would then have CF. PGD allows the doctors to screen a bunch of embryos in a lab for CF and then discard the ones that are positive for CF, while keeping those that are free of the condition to use for implantation into the mother.
Cooke and Mullane may have been the first to avoid having a child with CF in Ireland through PGD and IVF, but they certainly aren’t the first in the world. Couples in the United States have been using PGD to avoid having a child with CF for years.
CF is a scary, chronic, progressive, and as of right now, incurable condition. However, it is possible to live a healthy, happy and fulfilled life with CF; adults with the condition prove that every day. In addition, research is advancing at an accelerated pace, with new treatments promising longer life spans. Currently, someone born with CF today has a 50/50 chance of reaching age 40. That’s up from age 8 in the 1950s. What technology holds in CF advancements in the next 40 years could most definitely include a cure.
Anyone with CF was once an embryo with CF. Why would one of those lives be worthy of life, while the other isn’t? That discarded embryo could have been a life-long support to his sibling with CF. He could have been the one person in that child’s life that would have understood what it’s like to actually live with the condition. Only 70,000 people across the globe have CF, and the CF Foundation advises that none of them come within 6 feet of each other, unless they are family, in order to avoid cross contamination of bacteria and germs that can harbor in their respiratory systems. A sibling may be the only other person that child meets with CF.
A couple seeks to use PGD to avoid CF out of hope. I understand that. But there seems to also be fear behind the decision. Fear of taking care of another child with CF. Fear of the unknown. Fear that the children will pass germs back and forth to each other and therefore a second child with CF may risk the health of the first child. They see PGD as a way to prevent any of their future children from dealing with numerous doctor visits and medications and daily treatments. But it won’t necessarily do that. No one is guaranteed good health, CF or not.