Genetic Disability Case Study

Throughout society, there are disagreements on whether or not people should be able to screen and choose to have a child with a disability over a non-disabled child. Paula Garfield and Tomato Lichy are a deaf couple who currently have a three-year-old child, Molly, who was born deaf. The couple now wants to have a second child who they want to be deaf. Unfortunately, Garfield is now in her early 40s making it difficult for her to have children at this age, so instead the couple is looking into IVF for their next child. The problem of this situation is that a government bill in their country states that selecting a hearing child through IVF is allowed, but those found to have a deaf gene would be discarded. The couple believes that this is inhumane and deaf people should have the same rights as hearing people. Pre-implantation genetic diagnosis (PGD) is a technique used to test the genetic abnormalities of an embryo through in vitro fertilization (520). With PGD, those embryos with genetic defects (in this case those embryos with a deaf gene) are rejected while those that are mutation free are kept to be implanted into the mother (520). There is controversy on whether it is acceptable to discard those embryos with high risk of mutations such as in the case of Garfield and Lichy. Garfield and Lichy are fighting against
this law-enacted bill because they believe that it is morally wrong to be discriminatory toward a community of people. According to the couple, being deaf is more than just being disabled, but rather it is a part of being a linguistic community. Rejecting embryos with a deaf gene makes it seem as if diversity is shunned in society and is not accepting toward minorities or disabled people. This ties in with the couple’s belief that it is unjust because it sends out the wrong message saying deaf people are better off not being born. It is unfair for the deaf couple that want to screen an embryo possessing a deaf gene, but are unable to due to a government law.
1. If it ought to be morally acceptable to select for a hearing child through PGD, then it also ought to be morally acceptable to select for a deaf child through PGD.
2. It is morally acceptable to select for a hearing child through PGD.
3. Therefore, it is morally acceptable to select for a deaf child through PGD.

Since it is acceptable to choose a hearing child, the couple ought to be able to select a deaf child. Currently, the law allows couples using IVF to choose an embryo with pre-implantation genetic diagnosis that has the hearing gene. Any embryos that screen for a high risk of deafness are thrown out so no person is given the chance to select these embryos. It is discriminating to only be able to choose for a so-called “normal” child because it sets the impression that only “normal” people should live. Therefore, the couple should be allowed to screen and accept an embryo with a deaf gene to create a larger minority community. Where as Garfield and Lichy believe they should have the right to choose an embryo with a deaf gene, Davis argues that choosing a deaf embryo over a hearing one is morally impermissible.
She believes that the main conflict with genetic selection for disability is autonomy. This is a battle between the autonomy of parents and the autonomy of the future child. Parents and children have different rights and one that is emphasized by Davis are “rights-in-trust” (pg. 555). These are rights which ought to be saved for the child until he or she is an adult. Unfortunately, parents violate these rights which is what Garfield and Lichy are trying to
do. Davis deems that a child should have the right to an open future and if the child with the deaf gene is picked, then the autonomy of the child is violated. Deliberately choosing a deaf embryo means that the child later on would have limited options to move outside of that culture. The child’s life options would be greatly narrowed in terms of career, marriage, and education. Davis believes that choosing a deaf gene counts as moral harm as it is a decision being made that affects the child throughout his or her whole life. According to Davis, the couple’s argument stating that the government believes “deaf people are better off not born” is untrue. Davis argues that it is perfectly acceptable to have a disabled child naturally because realistically it would be either the disabled baby or no baby at all. This choice is different from that of IVF where if there are multiple embryos and the one that has the best opportunity for an open future gets discarded, then it would limit the future child’s autonomy. Autonomy plays a big role in Davis’ position on this argument. I believe that Davis has a stronger position saying that it is morally unacceptable to screen and chose in favor of a disability in relation to Kant’s theory. Kant states that people should be treated as an end in themselves rather than a means to an end. In this case, the future child would be forced into what the parents want and believe is a good life is which is something that is irreversible. Garfield and Lichy want a deaf child but are limiting the child’s opportunity at many things in life which is treating the child as a means to an end. Pre-implantation genetic diagnosis is used through in-vitro fertilization to help those who are unable to conceive naturally to choose the best quality embryo. There is debate whether or not it is morally permissible to screen in favor for an embryo with a disability. The couple in this case believes that it is discriminatory to discard embryos with a deaf gene as it limits the minority community. Davis on the other hand believes that it is wrong to choose a deaf gene embryo over a hearing one because it violates his or her rights to an open future. I believe that Davis argues a stronger case because picking a disabled child over a non-disabled one would go against Kant’s position of treating an individual as an end in themself. Cases like this one can cause a controversy, but help to regulate laws and practices in everyday life.