Welcome to Ethics Consult -- an opportunity to discuss, debate (respectfully), and learn together. We select an ethical dilemma from a true, but anonymized, patient care case, and then we seek an expert ruling.
Last week, you voted on the case of deaf parents wanting deaf children, and asking to use in vitro fertilization and embryo selection to guarantee it. Here are the results from 1,341 votes:
Should the doctor implant a deaf embryo intentionally, so that the couple will have a deaf baby?
Yes: 19.99%
No: 80.01%
Is selecting for a disability more acceptable than traits perceived as more positive?
Yes: 10.44%
No: 89.56%
And now, bioethicist Jacob M. Appel, MD, JD, weighs in with an excerpt from his new book, :
Deaf culture refers to a series of traditions, social norms, and values embraced by individuals with varying degrees of limited hearing acuity. Many members of the deaf community do not consider their deafness to be a disability at all. For them, having a child who can share their distinctive culture is an asset, not a liability. Similar reasoning is used by some deaf couples to reject cochlear implants for their children.
What complicates this scenario is that Jim and Janice want to use modern reproductive technologies to create a child who exhibits a condition that many nondeaf individuals do view as a disability. If one accepts their choice, one must then explain how the case differs from a deaf couple who give birth to a hearing infant but, wanting a deaf child, ask the physicians to sever nerves in her ears to render her deaf.
The moral distinction between choosing to create a deaf embryo or painlessly deafening an infant is somewhat arbitrary, often resorting to the fallacy of appealing to nature, and is generally hard to defend philosophically. At the same time, many people viscerally react to the cases differently -- and the law clearly views the latter sort of intervention as a form of child abuse.
There is no way of knowing in advance whether any particular child would be better served with or without the selected trait. One cannot wait until the child turns 18 and then take her hearing away, nor can one deny the child hearing until age 18 and then restore it.
In 2008, a deaf British couple, Tomato Lichy and Paula Garfield, who already had a deaf child, sought to use IVF to select for a second deaf child from a mix of deaf and hearing embryos. Parliament responded by passing the Human Fertilisation and Embryology Act 2008, which prevents using reproductive technologies to select for an embryo with a "serious physical or mental disability." Whether deafness qualifies as a serious disability remains an open question. (Of note, Lichy and Garfield ended up having a second daughter the old-fashioned way; by chance, she is also deaf.)
In the United States, such selection is generally unregulated. One can imagine that few physicians would agree to select for an embryo that all would agree was severely disabled or carried a serious disease -- such as intentionally implanting an embryo with a higher risk of cancer. Yet if society were to accept deafness as a legitimate trait for selection, one could make similar cases for blindness, dwarfism, and a host of other traits that threaten to limit the offspring in some manner.
It should be obvious, but we'll say it anyway -- this is not to be construed in any way as legal or medical advice. Any similarity to actual people is coincidental unless stated otherwise.
Jacob M. Appel, MD, JD, is director of ethics education in psychiatry and a member of the institutional review board at Icahn School of Medicine at Mount Sinai in New York City. He holds an MD from Columbia University, a JD from Harvard Law School, and a bioethics MA from Albany Medical College. Appel is the author of the new book, .