The difficult way to eradicate a genetic mutation

The Journal of the American Medical Association (JAMA) has a section in each issue titled “A Piece of My Mind” in which one of the physician readers writes a personal essay. The February 28, 2017 issue includes an essay titled “Eradicating a Genetic Mutation” by Maryl Goldberg Sackheim, an OB/GYN physician, who gives a personal account of her choice to use IVF and PGD to give birth to a child who did not carry the BRCA gene which had resulted in her having a prophylactic bilateral mastectomy. She describes undergoing IVF and PGD as the most trying part of her journey, not because of any moral conflicts, but because of the difficulty of going through the process of IVF itself. She concludes by saying that in spite of the difficulty of the process she is glad that she went through it to be assured that her child and possible grandchildren would not be affected by the BRCA gene. While she admits that the use of PGD for adult-onset diseases is controversial, she appears to be advocating for its routine use in this type of situation and educating patients who have this type of genetic disorder about the availability of this technique.

Dr. Sackheim’s only mention of any moral concerns about the use of IVF and PGD was by stating that it is sometimes rebuked as “playing God” and that it is argued that “choosing an embryo with the ‘right’ genetic makeup is like choosing to abort a fetus based on sex.” She dismisses those concerns by saying that “approving opinions view PGD is the solution to stamp out a dangerous gene mutation.” She seems to be saying that in comparison to the noble goal of stamping out a dangerous gene mutation the theoretical moral concern about choosing which children we will allow to live based on the child’s characteristics is unimportant.

An underlying assumption that the author is making, but may not even realize that she is making is that using IVF and PGD is the only way that she could prevent having a child who has the BRCA gene. Our culture has become so accustomed to the ideas of reproductive choice and reproductive freedom that it is assumed that every couple has a right to have healthy genetic offspring. It is easy to forget that there is a much simpler way to be assured that a genetic mutation is eradicated in one’s family. That is to make the choice not to have one’s own genetic children. That option does not involve any risks or the difficult medical procedures to which the author subjected herself. If a couple chooses that option they can either choose to remain childless, or adopt children who are very much in need of caring parents. When we realize that this option is available it becomes clear that the choice is not a choice between having children who carry a gene for a serious disorder and undergoing the physically demanding and morally concerning process of IVF and PGD that is morally problematic due to the creation of multiple embryos and destruction of those who carry the genetic disorder. The choice is between the option of not having genetically related children and having a genetically related child by this difficult and morally problematic method. When the choice is stated in that way is not obvious that IVF and PGD is the better choice and that it should be promoted to those who carry genes for adult onset diseases.

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