God no longer has absolute authority in determining which child is born deaf and which is not. Some deaf parents have taken matters into their own hands, intentionally creating deaf children. This has led to an international uproar, as well as the proposal of legislation to prevent the selection of or creation of deaf babies.
The McCullough and Duchesneau Controversy
The most visible and oft-quoted case of a couple actively hoping to create deaf children was from, “A World of Their Own,” by Liza Mundy for The Washington Post Magazine about two deaf lesbians, Candace McCullough and Sharon Duchesneau, who found a deaf man with five generations of deafness willing to donate his sperm to Sharon, who has four generations of deafness on her mother’s side of the family. A genetic counselor informed them that they had a 50-50 chance of their child being deaf. The outcome was the successful conception of two children, both deaf.
The ensuing public outcry demanded that these parents justify their decision. Many characterized McCullough and Duchesneau as selfish, creating children to meet their own needs rather than thinking about the children’s future opportunities. Following this logic, McCullough and Duchesneau could be just as selfish as parents who decide to abort their fetuses who have Down Syndrome. According to a New York Times article, “about 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion.”
The McCullough and Duchesneau decision is unique and controversial because they deliberately sought out a multiple-generation deaf donor to increase their chances of conceiving a deaf child and revealed their desires in an international publication. Unbeknownst to many hearing people, some deaf couples, consciously or unconsciously, seek partners who may increase their likelihood of conceiving a deaf child. According to the authors of “Attitudes of Deaf Individuals Towards Genetic Testing” in the American Journal of Medical Genetics, “Perhaps the most significant finding of our survey is that regardless of their cultural orientation, more than half of our respondents expressed an interest in considering the results of genetic testing when they select a marriage partner.” The research did not indicate if the partners wanted to obtain a test to increase or decrease the likelihood of conceiving a deaf child.
In Vitro Fertilization (IVF) and Genetic Counseling
The incidence of deaf couples who actively intend to create deaf children either by in vitro fertilization (IVF) or choosing high-incidence spouses/partners to conceive their children is probably a very small percentage and takes place on an infinitesimal scale (the culturally deaf community is quite small, arguably estimated at one million in the U.S).
In a 1998 study by Anna Middleton, a genetic counselor at Addenbrooke’s Hospital in Cambridge, UK, 87 deaf activists were polled. Middleton found that “16% of participants said that they would consider having prenatal diagnosis and, of these, 29% said that they would prefer to have deaf children.” After criticism of her questionnaire concerning her small sample size, according to a Nature article, “Genetics: Deaf By Design”, Middleton polled a larger sample of hard of hearing, hearing people with deaf family members, and profoundly deaf people — two-thirds of whom were not identified as culturally Deaf, according to the study. Nature reports that Middleton learned:
Across the deaf group, about one in five said they would consider prenatal genetic testing, mostly to prepare for the birth of a hearing or a deaf child.
Few of the deaf respondents said they would consider abortion, and in most of those cases, their choice was actually for a hearing child. None of those who said they would abort a deaf fetus was culturally Deaf. But three deaf people said they would consider aborting a fetus if it could hear. Two of these were culturally Deaf.
Nature shares the story of a deaf couple who was “devastated” to learn from a genetic counselor that they had a low likelihood of producing deaf offspring. Regardless of whom deaf people choose as their partner, they may harbor hopes of giving birth to a deaf child. A BBC television show, “My Family - Want a Deaf Baby“, covered the trials and tribulations of a deaf couple, Claire and Paul, about to give birth to a baby that they conceived together. They hope to have a deaf baby. When an audiologist reveals that the baby is deaf, the couple reacts with giddy delight. In Nature, Ted Supalla of the University of Rochester (who has hearing children and a hearing wife) shares a sentiment that some in the culture, like Claire and Paul, can relate to:
I don’t see anything wrong with [the preference to have deaf children]. I see it as being similar to how parents determine the religion or education of their child.
The U.K. Human Fertilisation and Embryology Bill
It has been five years since the controversial Mundy article roiled American and international readers. On the other side of the Atlantic, a recently proposed legislation in the United Kingdom, called the Human Fertilisation and Embryology Bill, has a section, 14(4)(9), calling for the rejection of any embryo containing genes that would cause a disability, including deafness. Ironically, language elsewhere in the bill proposes prohibiting the selection of an embryo on the basis of its gender. It is possible that the Mundy article, along with other similar stories in the United States, influenced the proposed legislation and current discussion. The explanatory notes to the bill, in section 109 states:
Clause 14(4) contains a provision that relates to the provisions on embryo testing (see note on clause 11). New sections 13(8) to (11) amend the 1990 Act to make it a condition of a treatment licence that embryos that are known to have an abnormality (including a gender-related abnormality) are not to be preferred to embryos not known to have such an abnormality. The same restriction is also applied to the selection of persons as gamete or embryo donors. This would prevent similar situations to cases, outside the UK, where positive selection of deaf donors in order deliberately to [sic] result in a deaf child have been reported.
Baroness Deech, a Lord in the UK, followed up with this point in the ensuing debate:
I hope that your Lordships will be pleased that the deliberate choice of an embryo that is, for example, likely to be deaf will be prevented by Clause 14.
The proposed UK Human Fertilisation and Embryology Bill focuses solely on the selection process during IVF conceptions, which is not the same process in which McCullough and Duchesneau conceived their children. However, there may be IVF decisions that have not been publicized in the United States, according to “Genetic testing of embryos: practices and perspectives of US in vitro fertilization clinics”:
Three percent of IVF–PGD [Preimplantation Genetic Diagnosis] clinics report having provided PGD to couples who seek to use PGD to select an embryo for the presence of a disability.
In addition, Nature reports that The Infertility Treatment Authority for the state of Victoria in Australia said it would not allow a couple hoping for a deaf child to use an IVF preimplantation test. The practice of choosing children who share their parent’s disability may be most prevalent among the deaf and dwarf communities since both were the focus of an Associated Press article about selection of embryos that would create disabled children.
Francis Murphy, a leading UK deaf advocate said in a Times Online article, “If choice of embryos for implantation is to be given to citizens in general, and if hearing and other people are allowed to choose embryos that will be ‘like them’, sharing the same characteristics, language and culture, then we believe that deaf people should have the same right.” Is he right that the focus should be on preserving individual rights, not having the government impose rules on the actions of a “pinch of sand on a beach”?
Furthermore, Nature concludes:
Given these diverse viewpoints, some experts argue that it is unfair to focus on the minority of the culturally Deaf who say they would consider aborting a hearing fetus. “It is offensive to keep harping on about this scenario. While many deaf parents may harbour a preference for having deaf children, the data suggest that the majority would never consider doing it,” says Barbara Biesecker, a genetic counselor at the National Human Genome Research Institute in Bethesda.
The BDA Response to Proposed UK Bill
The British Deaf Association (BDA) drafted a poignant, but flimsy response to the authors of the proposed Human Fertilisation and Embryology Bill. The response outlined realistic situations where deaf couples would be put in an unfair position that may or may not be the intention of the Bill. For example, if the legislation is approved, as is, Alison Bryan, an attorney in the United Kingdom, speculates that 14(4)(9) of the Bill could have the following repercussions:
Say e.g. you have a deaf gene in your family, and for whatever reason needed assisted fertilisation in order to get pregnant. If the embryos developed were known be deaf, a female would not be allowed to be made pregnant by a deaf embryo, and a hearing embryo must always be picked. This could also mean that deaf people are prohibited from partaking in assistance with fertilisation (donation of eggs, sperm).
However, the BDA makes the following poor counterargument to the Bill:
Impact of genetic screening and selection against deafness and the negative effect on the remaining population of deaf people. By codifying into law a preference for selecting embryos that are genetically associated with hearing, potential deaf people who would have otherwise been born will not have an opportunity to exist. Over time this is likely to bring about a less diverse society, including the potential for the decline or demise of BSL. Smaller numbers of deaf people overall may result in less communication access and fewer services offered to this population.
In essence, the BDA posits that deaf people be allowed to produce more deaf people for the purpose of maintaining communication access and services provided to the community. No group should be subsidized by any government for the purpose of ensuring its survival. An endangered list for animals is sufficient; governments are not obligated to create a list of endangered cultures and languages around the world and work to save them.
The BDA also responds to common arguments, which are two-fold: ‘right to an open future’ argument, in which a child should be provided the greatest number of opportunities possible and the ‘conditions of exit’ argument, which argues that deaf people are isolated from mainstream society. The latter argument is valid, because signing deaf people interact with hearing society on a daily basis, and do so without disruption. However, the former argument may be an optimistic assessment of the opportunities available to deaf and hard of hearing people.
A number of avenues are closed for the deaf person, mostly at no fault of the deaf person’s. Most of the problems are rooted in attitudes and perceptions. Claiming that deaf people face a number of opportunities that is only slightly less than hearing people is a mistaken assumption. Making such a bold statement could undermine deaf advocates’ efforts to improve the quality of our lives through future legislation that continues to protect our rights. Some deaf people may prefer to, selfishly, improve their opportunities and quality of lives rather than preserve a culture that will likely dwindle to numbers which renders it extremely difficult to support the culture.
The Future of Genetic Screening and Culture
It is possible that unborn children in utero could be subject to genetic screening for deafness in the near future. While fetal genetic screening and rejection/abortion of embryos may not be explicitly banned in the United States (which is a mistake the United Kingdom is seemingly leaning toward), the smart move for any legislator concerned about this issue is to simply require screening for deaf genes in embryos. This will then leave it up to parents to make a decision similar to what is occurring today with Down Syndrome screening. George F. Will of Newsweek, who has a son with Down Syndrome, reacted with anger towards the implementation of Down Syndrome screening, arguing:
But what is antiseptically called “screening” for Down syndrome is, much more often than not, a search-and-destroy mission: At least 85 percent of pregnancies in which Down syndrome is diagnosed are ended by abortions.
While hearing people will likely opt to avoid any perceived hardship by rejecting embryos or even aborting fetuses, the quandary facing a deaf person is much more complex. Part two of this blog will analyze the decision facing deaf parents who contemplate intentionally creating a deaf child or selecting an embryo based on the possibility that the result will be a deaf child.
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