Bioethics For Choosing Disability Research Paper
Bioethics for ‘Choosing Disability’ via
Pre-implantation Diagnosis-
PSY345H5F TERM PAPER
PSY345H5F
Exceptionality: Disability and Giftedness
Dr. Stuart Kamenetsky
Parents all over the world have one great thing in common, wanting the best for their children and giving them great opportunities to pursue their dreams. Children are considered special blessings from God, especially for couples that were bestowed with this blessing after much patience. Furthermore, women who could not conceive were known to be cursed and inferior to other fertile women. Although, there are still many couples whose attempts to conceive a child naturally go vain, medical science has allowed these problems to …show more content…
be resolved through various interventions, such as; infertility treatments, intrauterine insemination, in vitro fertilization, surrogacy or even sperm donor clinics. There are many things to be considered when it comes to family planning, before a couple decides to bring a child into this world. For some, it may to wait until they are financially well off, moving to a family friendlier neighborhood, or possibly visiting a fertility clinic to weigh out their options. Fertility clinics are also beneficial if the couple is interesting in knowing the probability of passing a disease with a family history or a disability off to their offspring. Moreover, couples looking through a donor catalogue may pick and choose a donor that may possess preferential characteristics such as; eye color, hair color, height, race, and/or education. As one might say, conceiving through sperm donors is the safest alternative precisely because donors with congenital disabilities are screened out long before they would ever make the catalogue, as the sperm banks are aware that the probability of such a withdrawal is very low. But as strange as deliberately passing a disability to an unborn child may seem, there are many advocating for the allowance of such services. Some parents have taken steps to ensure that they have children with a desired disability. What is meant by ‘disability’ is subject for considerable debate, however. For many, disability is something undesirable, as it significantly reduces the individual’s quality of life and social opportunities. This scenario is particularly relevant to the Deaf Culture who consider themselves a part of a minority group. This paper intends to explore the controversy regarding the bioethics of deliberately choosing a disability and implementing it on the case study of James Kittell and wife and discussing why they should not be allowed to deliberately select an embryo with a disability via the use of pre-implantation diagnosis.
James Kittell is a congenital deaf married to a wife of 5 years. James and wife are both belonging to the Deaf Culture and seem very content with their ‘disability’. Their main mode of communication is American Sign Language and do not consider their condition as a defect or a disability, rather a different viewpoint of life that differs only slightly from the norm. Both James and his wife were raised in a typical nuclear family with hearing parents and siblings. Once they learned that they were expecting their first child, they were thrilled. This excitement, however was short-lived as they soon found out that he was born hearing with no signs of partial deafness. They were hoping for a deaf child like themselves so that he could easily be integrated into their culture and so they could set a new generation of the Deaf in the family. As Jimmy, their son, turned four, they started fearing that they would eventually lose their son, to the hearing world. They decided to consult their family doctor who referred them to an otologist with whom they could discuss the possibility of surgically deafening their son by removing his cochleas from both of his ears. As this was illegal in America, James took it upon himself to take Jimmy to Brazil where this type of surgery is permissible. Jimmy refused once he learned of his parents’ intention but was told that he would have no problem adjusting and was not given much of an option. The surgery was successful and James and his wife now consider Jimmy a ‘special blessing’. They are now ready for their second child, but instead of simply hoping for that child to be deaf, they are considering the possibility of conceiving through pre-implantation diagnosis, since they do not want to take their chances as they did with Jimmy. This case study raises many ethical issues about deliberately choosing deafness over normality and why it should never be permissible to do so on the basis of fundamental human rights.
The choice to seek deaf children cuts across the grain of virtually all discussion in bioethics about prenatal interventions involving the traits of children. It is not uncommon to see however, bioethicists spending their time worrying about the prenatal interventions regarding producing super kids, with superior qualities not commonly observed in their peers of the same age. These qualities usually exceed their peers and even parents in sight, hearing, intelligence, athletic skills, immunity to disease, strength and many more among the list of desirable traits. If options to select these enhanced traits were available, why would the parents not want these for their children? There seems to be no logical reasoning behind limiting their children of these beneficial traits. In addition, these traits should be equal to everyone and not just the wealthy that already have the most advantages many people lack. From time to time, bioethics forums are flooded with such debatable issues and concerns when it comes to ‘designing’ babies through the use of medical interventions. By contrast, however, parents going through the extra mile to ensure their children are born with a congenital disability, particularly deafness, take the debates and the controversies surrounding these issues in an entirely different direction. Two contrasting views of deafness exist in today’s society. Most people consider deafness as a pathological condition resulting in profound hearing loss, followed by the viewpoint that deafness is a sensory deficit. People diagnosed with this condition are seen to be at a great disadvantage and strongly deviant from the norm. Moreover, the minority viewpoint regards deaf people as belonging to a culture paralleling themselves with racial groups such as Blacks, Hispanic and others who are bonded together by shared values, and a common language (Wagner, 2008). Those that belong to this culture consider the property of being deaf to be a highly desirable characteristic and a unique cultural identity.
The couple mentioned above takes great pride in being a part of such a culture and feel their motives of wanting deaf children through various means to be misunderstood. James and his wife wanted children like themselves and did not see their preferences as a moral offence. In addition, James felt so strongly connected with this culture that he wanted to see in his children the deafness that was so central to his identity. While the decision of this couple to want a deaf child grew out of their own moral intuition, Teresa Burke is amongst the many commentators that has offered a defense of such a practice, as long as certain conditions are met. Teresa Burke (2005) argues that parents may be allowed to have deaf children only if they are deaf themselves and are able to work on offering language or some means of communication to their children. She argues that deafness is compatible with the ability to pursue a rewarding life. Furthermore, she feels that eliminating many environmental issues, such as stigma and discrimination can offset its disadvantages and a society where the deaf and the hearing live alongside one another, coexisting peacefully is not entirely unattainable (Burke, 2011). The counterparts of this argument, which is much more relatable to the norm suggest that parents have an obligation to enhance the capacities of their children to the extent that is within their power. Julian Savulescu (2001) feels that there is a certain obligatory force to treat and prevent diseases and that we have an obligation to try to manipulate these characteristics to give an individual the best opportunity of the best life, not the other way around. To fail to treat our children’s disease is to harm them. In general, he says, parents should be selfless when it comes to improving their children’s physical, mental, and psychological capacities. Failing to do so is harming them, just as it is to deliberately reduce these capacities and limiting them of a state of well being, regardless of how it is done (Savulescu, 2001). From a perspective like this, it is evident that prevention of suffering is central to anyone’s moral belief. James and his wife were definitely not selfless, as they disregarded Jimmy’s refusal and went ahead with the surgery anyway. Despite the fact that deafness does not disable the possibility of a meaningful life, moral considerations suggest that parents should not be choosing this alternative intentionally. All in all, deafness is a disability in the sense that it represents an inhibition in a major life function and James committed a strong moral transgression by making a choice for his son that cannot be undone.
Typically, the search for genes that cause or contribute to an undesirable medical condition is followed by the hope of finding a cure for that condition, or eradicating it in general (Wagner, 2008). Deafness differs from most disabilities precisely because it is not universally viewed as an undesirable medical condition, and according to many advocating this point; there is no need to even find a cure, since it is not a problem. This is not to say that deaf people deny their audiological status but it illustrates their importance of culture over pathology. The current popularity of cochlear implant surgery today among hearing parents of deaf children with its post rehabilitation oral skills, has led to a reduction in the number of deaf children attending special residential school for the deaf at an early age. When the FDA announced its proposal in 1990 to provide children with cochlear implants, the members of the deaf community reacted negatively and even referred to it as ‘cultural genocide’ (Scully, 2011). Now, many years later, the ethical issues of cochlear implant surgery seem to not be a problem anymore because of the advances in genetic engineering that has allowed people from this community to genetically ‘design’ their babies to their preferences. Although this technology is meant to eradicate any form of disability altogether, it has recently been used to just do the opposite. Many of these deaf community members have been shifting their focus to prenatal genetic diagnosis (PGD) in tandem with in vitro fertilization (IVF) for embryo screening. A study released in 2008 found that 3 percent of in vitro fertilization-PGD clinics in the United States have provided PGD to select for a disability (Wagner, 2008). In addition to PGD, other technologies may soon be available to people wanting to have deaf children, such as gene replacement therapy. In other words, deafness could be ‘created’ by deliberately inserting a deaf gene. This goes back to the topic discussed earlier regarding genetically creating a super kid, with extraordinary characteristics. PGD is an expensive procedure currently offered only to couples at risk of having a child suffering from a serious genetic disease, but there is nothing inherent in the technology that limits it to such uses. This means couples wealthy enough to afford such practices will be given full freedom to genetically create babies with preferable qualities whereas their less fortunate counterparts, who will not be able to afford these types of procedures, will always be at a disadvantage (Murphy, 2009). This leads to an entirely broad debate regarding eugenics and why it should not be practiced. Authors such as John Harris (2000) argue that intentionally selecting for disability in one’s selfish interest is a case of moral harm, and by bringing a child into this world who has a disability using technology in ways that it was not meant for, it significantly violates the child’s right to an open future (Harris, 2000). It is a known fact, which neither the deaf community itself cannot deny, that people suffering from a hearing loss lead more difficult lives than hearing counterparts, partly because there will always be more hearing people in this world than deaf and there will never be enough accommodations. Loss of hearing, therefore, in such a linguistic society can become dangerous when a deaf person is unable to detect nearby hazards thereby affecting their sense of independence and security and limiting social opportunities. Alternative viewpoints proposed by Albany Lucas (2012) contend that selection for a particular disability is as problematic as selection against, since both are based on the assumption that a single genetic characteristic should be the determining factor in the decision to have a child (Lucas, 2012). Opponents of this point assert that although they value the existence of living disabled individuals and believe in giving these individuals equal respect and opportunities as any other human being, it is morally wrong to knowingly bring a disabled child into the world and limiting their opportunities. In addition, the harm of genetically harming children can be clearly seen when considering how the same harm without genetics involved would be viewed.
Genetics, reproductive technologies and techniques such as PGD are simply tools. Tools are used to accomplish things; whether the use of the tool is ethical depends on what it is that we are trying to accomplish. If something is morally wrong, it does not matter what tools or what method is used to accomplish that, it still remains wrong. In the case of James, who deliberately deafened his first hearing child, by surgically removing his cochlea so he could become a part of their culture, now wants to create a second deaf baby using genetic engineering techniques. Preventing a child from hearing harms the child; it limits and disadvantages the child and therefore should not be permissible for medical personnel to carry on with this kind of procedure, especially for Jimmy and his wife, who are evidently putting their own happiness ahead of their children’s since they disregarded their son’s refusal. Jimmy was 4 years old when he was forced into such an irrational decision, which means he had experienced the hearing world and had therefore chosen to stay in it. All the facts are the same and lets say, via PGD with in vitro fertilization Jimmy and his wife have their congenital deaf child. But now a cure for this deafness is discovered, it is risk free with no side effects, which leads us to think, would the parents, in this case, be right to withhold this cure for deafness from their child? Would the child have any legitimate complaint if they did not cure his deafness? Could this child complain to his parents dismissing him the possibility of being able to listen to music, the sound of trees, the wind, the rain, the waves on the shore, or hearing a spoken word or even learning spoken language? There is no imagining to how the child would feel when it discovers that it lacked these experiences only because of his/her parent’s deliberate denial. Furthermore, it is not plausible to say that all these things that the child could have had, but because of it’s parents decision, are unimportant, so much so that their loss or absence of it is not even considered a disability to them.
Language choice is often used as a primary factor to distinguish members of different groups.
Similarly, deaf community is bonded together via a signed language, American Sign Language (ASL). Although this characteristic is not the sole criterion, it is viewed as a strong distinction between them and the non-deaf community (Singleton & Tittle, 2000). Furthermore, the deaf community includes members with hearing losses at both levels of extreme, from those who are profoundly deaf to those normal hearing children of the deaf community. There are also people who are hard of hearing individuals that identify themselves as part of the deaf community. Therefore, acceptance and integration into the deaf community is depended upon the attitude and the use of ASL, which means that in order to belong to the deaf community, one does not need to be born deaf. Furthermore, hearing children born to deaf parents are considered bilingual and bicultural since they potentially share the language and culture of their deaf parents and they are inevitably members of the hearing community (Singleton & Tittle, 2000). Although there has been some concern regarding signs of spoken language delay observed in hearing children of non-hearing parents, there is not much evidence to support this claim. Therefore, deliberately removing Jimmy’s cochleas was unnecessary since he did not need to be deaf to belong to the Deaf community. Many deaf parents, occasionally have the misguided notion that they should not sign with their child simply because the child is hearing. Signing with the hearing child, from its birth, not only teaches the hearing child to be fluent in ASL, but also it ensures stronger communication between the parents and the child. Moreover, turning normal hearing children to a deaf child overcomes the possibility of having hearing children that are bilingual and bicultural. Schiff-Myers (2004) asserts that many hearing children of deaf parents evidently develop speech and language
normally provided that they have some exposure to normal hearing speakers and if their family life is otherwise normal. In addition, Jimmy and his wife both belong to hearing families, which means there would be enough exposure to normal hearing from the grandparents, and the child would consequently not develop any language delay. In any case, if a hearing child of deaf parents does show signs of spoken language delay, then an appropriate practical plan to enhance the child’s spoken language input would be in order (Schiff-Myers, 2004). James and his wife ought to use the best mode of communication to ensure effective parenting, and to promote natural language acquisition for the child, whether it is spoken or signed language.
“It is a simple fact that it is better to have five senses than four” (Jeanette Winterson). Who can argue against that? Yet, what Winterson calls, a ‘simple fact’ may not be so simple for everyone as clearly illustrated in this paper. This is especially not a simple fact when it comes to the Deaf community. Many facts arise from those who live the deaf lives. One such fact is that they believe being Deaf should be viewed as parallel to being Black, or Hispanic. Another fact is that these Deaf community members feel no objection expanding their community by wanting deaf children, whether it may be through prenatal medical interventions or postnatal surgical procedures. This paper explored the question of whether it is morally justifiable to use genetic technology to ensure the birth of deaf child, putting James and his family into focus. The issue here is not about being supportive of people who are deaf or otherwise disabled. The basic issue is whether or not there are ethical limits to what parents can impose on a child. Pro-choice campaigners and reproductive freedom supports argue that it should be the couple’s choice or wish on how they want to raise their child, but through negative enhancement and achieving outcomes that are socially not preferred affects everyone in the community in general (Karpin, 2008). Morally speaking, parents have a duty to use assisted technology to give their children the best opportunity of the best life, not deliberately reducing the child’s welfare. James and his wife were blessed with a normal hearing baby, who, they believed, was not a part of their world and tried to integrate him via unacceptable means and unethical reasoning. This is not in any way, supposed to generalize among all members of the Deaf community, instead every case should be handled on an individual basis. No reasons can justify intentionally causing a disadvantage that cannot be offset by other advantages and this is exactly what this paper has served to do.
References
Burke, T. B. (2011). Quest for a Deaf Child: Ethics and Genetics. Dissertation at The University of New Mexico.
Harris, J. (2000). Is There a Coherent Social Conception of Disability?. Journal of Medical Ethics, 26, 95-100.
Karpin , I. (2008). Choosing Disability: Preimplantation Genetic Diagnosis and Negative Enhancement. Legal Studies Research Paper at The University of Sydney, Sydney Law School.
Lucas, A. (2012). Prohibiting Preferences: Unjustifiable Discrimination Against Deaf People Who Want a Deaf Child. International Journal of Disability, Community, and Rehabilitation, 12(2).
Murphy, T. F. (2009). Choosing Disabilities and Enhancements in Children: A Choice Too Far?. Reproductive BioMedicine Online, 18(1), 43-49.
Savulescu , J. (2001). New Breeds of Human: The Moral Obligation to Enhance. Reproductive BioMedicine Online, 10(1), 36-39.
Schiff-Myers, N. (2004). Hearing Children of Deaf Parents. Language Development in Exceptional Circumstances, 6, 47-61.
Scully, J. L. (2011). "Choosing Disability", Symbolic Law, and The Media. Medical Law International, 11, 197-212.
Singleton, J. L., & Tittle, M. D. (2000). Deaf Parents and Their Hearing Children. Journal of Deaf Studies and Deaf Education, 5(3).
Wagner , E. V. (2008). Equal Choice, Equal Benefit: Gendered Disability and The Regulation of Assisted Human Reproduction in Canada. Canadian Journal of Women and the Law, 20(2).
Pre-implantation Diagnosis-
PSY345H5F TERM PAPER
PSY345H5F
Exceptionality: Disability and Giftedness
Dr. Stuart Kamenetsky
Parents all over the world have one great thing in common, wanting the best for their children and giving them great opportunities to pursue their dreams. Children are considered special blessings from God, especially for couples that were bestowed with this blessing after much patience. Furthermore, women who could not conceive were known to be cursed and inferior to other fertile women. Although, there are still many couples whose attempts to conceive a child naturally go vain, medical science has allowed these problems to …show more content…
be resolved through various interventions, such as; infertility treatments, intrauterine insemination, in vitro fertilization, surrogacy or even sperm donor clinics. There are many things to be considered when it comes to family planning, before a couple decides to bring a child into this world. For some, it may to wait until they are financially well off, moving to a family friendlier neighborhood, or possibly visiting a fertility clinic to weigh out their options. Fertility clinics are also beneficial if the couple is interesting in knowing the probability of passing a disease with a family history or a disability off to their offspring. Moreover, couples looking through a donor catalogue may pick and choose a donor that may possess preferential characteristics such as; eye color, hair color, height, race, and/or education. As one might say, conceiving through sperm donors is the safest alternative precisely because donors with congenital disabilities are screened out long before they would ever make the catalogue, as the sperm banks are aware that the probability of such a withdrawal is very low. But as strange as deliberately passing a disability to an unborn child may seem, there are many advocating for the allowance of such services. Some parents have taken steps to ensure that they have children with a desired disability. What is meant by ‘disability’ is subject for considerable debate, however. For many, disability is something undesirable, as it significantly reduces the individual’s quality of life and social opportunities. This scenario is particularly relevant to the Deaf Culture who consider themselves a part of a minority group. This paper intends to explore the controversy regarding the bioethics of deliberately choosing a disability and implementing it on the case study of James Kittell and wife and discussing why they should not be allowed to deliberately select an embryo with a disability via the use of pre-implantation diagnosis.
James Kittell is a congenital deaf married to a wife of 5 years. James and wife are both belonging to the Deaf Culture and seem very content with their ‘disability’. Their main mode of communication is American Sign Language and do not consider their condition as a defect or a disability, rather a different viewpoint of life that differs only slightly from the norm. Both James and his wife were raised in a typical nuclear family with hearing parents and siblings. Once they learned that they were expecting their first child, they were thrilled. This excitement, however was short-lived as they soon found out that he was born hearing with no signs of partial deafness. They were hoping for a deaf child like themselves so that he could easily be integrated into their culture and so they could set a new generation of the Deaf in the family. As Jimmy, their son, turned four, they started fearing that they would eventually lose their son, to the hearing world. They decided to consult their family doctor who referred them to an otologist with whom they could discuss the possibility of surgically deafening their son by removing his cochleas from both of his ears. As this was illegal in America, James took it upon himself to take Jimmy to Brazil where this type of surgery is permissible. Jimmy refused once he learned of his parents’ intention but was told that he would have no problem adjusting and was not given much of an option. The surgery was successful and James and his wife now consider Jimmy a ‘special blessing’. They are now ready for their second child, but instead of simply hoping for that child to be deaf, they are considering the possibility of conceiving through pre-implantation diagnosis, since they do not want to take their chances as they did with Jimmy. This case study raises many ethical issues about deliberately choosing deafness over normality and why it should never be permissible to do so on the basis of fundamental human rights.
The choice to seek deaf children cuts across the grain of virtually all discussion in bioethics about prenatal interventions involving the traits of children. It is not uncommon to see however, bioethicists spending their time worrying about the prenatal interventions regarding producing super kids, with superior qualities not commonly observed in their peers of the same age. These qualities usually exceed their peers and even parents in sight, hearing, intelligence, athletic skills, immunity to disease, strength and many more among the list of desirable traits. If options to select these enhanced traits were available, why would the parents not want these for their children? There seems to be no logical reasoning behind limiting their children of these beneficial traits. In addition, these traits should be equal to everyone and not just the wealthy that already have the most advantages many people lack. From time to time, bioethics forums are flooded with such debatable issues and concerns when it comes to ‘designing’ babies through the use of medical interventions. By contrast, however, parents going through the extra mile to ensure their children are born with a congenital disability, particularly deafness, take the debates and the controversies surrounding these issues in an entirely different direction. Two contrasting views of deafness exist in today’s society. Most people consider deafness as a pathological condition resulting in profound hearing loss, followed by the viewpoint that deafness is a sensory deficit. People diagnosed with this condition are seen to be at a great disadvantage and strongly deviant from the norm. Moreover, the minority viewpoint regards deaf people as belonging to a culture paralleling themselves with racial groups such as Blacks, Hispanic and others who are bonded together by shared values, and a common language (Wagner, 2008). Those that belong to this culture consider the property of being deaf to be a highly desirable characteristic and a unique cultural identity.
The couple mentioned above takes great pride in being a part of such a culture and feel their motives of wanting deaf children through various means to be misunderstood. James and his wife wanted children like themselves and did not see their preferences as a moral offence. In addition, James felt so strongly connected with this culture that he wanted to see in his children the deafness that was so central to his identity. While the decision of this couple to want a deaf child grew out of their own moral intuition, Teresa Burke is amongst the many commentators that has offered a defense of such a practice, as long as certain conditions are met. Teresa Burke (2005) argues that parents may be allowed to have deaf children only if they are deaf themselves and are able to work on offering language or some means of communication to their children. She argues that deafness is compatible with the ability to pursue a rewarding life. Furthermore, she feels that eliminating many environmental issues, such as stigma and discrimination can offset its disadvantages and a society where the deaf and the hearing live alongside one another, coexisting peacefully is not entirely unattainable (Burke, 2011). The counterparts of this argument, which is much more relatable to the norm suggest that parents have an obligation to enhance the capacities of their children to the extent that is within their power. Julian Savulescu (2001) feels that there is a certain obligatory force to treat and prevent diseases and that we have an obligation to try to manipulate these characteristics to give an individual the best opportunity of the best life, not the other way around. To fail to treat our children’s disease is to harm them. In general, he says, parents should be selfless when it comes to improving their children’s physical, mental, and psychological capacities. Failing to do so is harming them, just as it is to deliberately reduce these capacities and limiting them of a state of well being, regardless of how it is done (Savulescu, 2001). From a perspective like this, it is evident that prevention of suffering is central to anyone’s moral belief. James and his wife were definitely not selfless, as they disregarded Jimmy’s refusal and went ahead with the surgery anyway. Despite the fact that deafness does not disable the possibility of a meaningful life, moral considerations suggest that parents should not be choosing this alternative intentionally. All in all, deafness is a disability in the sense that it represents an inhibition in a major life function and James committed a strong moral transgression by making a choice for his son that cannot be undone.
Typically, the search for genes that cause or contribute to an undesirable medical condition is followed by the hope of finding a cure for that condition, or eradicating it in general (Wagner, 2008). Deafness differs from most disabilities precisely because it is not universally viewed as an undesirable medical condition, and according to many advocating this point; there is no need to even find a cure, since it is not a problem. This is not to say that deaf people deny their audiological status but it illustrates their importance of culture over pathology. The current popularity of cochlear implant surgery today among hearing parents of deaf children with its post rehabilitation oral skills, has led to a reduction in the number of deaf children attending special residential school for the deaf at an early age. When the FDA announced its proposal in 1990 to provide children with cochlear implants, the members of the deaf community reacted negatively and even referred to it as ‘cultural genocide’ (Scully, 2011). Now, many years later, the ethical issues of cochlear implant surgery seem to not be a problem anymore because of the advances in genetic engineering that has allowed people from this community to genetically ‘design’ their babies to their preferences. Although this technology is meant to eradicate any form of disability altogether, it has recently been used to just do the opposite. Many of these deaf community members have been shifting their focus to prenatal genetic diagnosis (PGD) in tandem with in vitro fertilization (IVF) for embryo screening. A study released in 2008 found that 3 percent of in vitro fertilization-PGD clinics in the United States have provided PGD to select for a disability (Wagner, 2008). In addition to PGD, other technologies may soon be available to people wanting to have deaf children, such as gene replacement therapy. In other words, deafness could be ‘created’ by deliberately inserting a deaf gene. This goes back to the topic discussed earlier regarding genetically creating a super kid, with extraordinary characteristics. PGD is an expensive procedure currently offered only to couples at risk of having a child suffering from a serious genetic disease, but there is nothing inherent in the technology that limits it to such uses. This means couples wealthy enough to afford such practices will be given full freedom to genetically create babies with preferable qualities whereas their less fortunate counterparts, who will not be able to afford these types of procedures, will always be at a disadvantage (Murphy, 2009). This leads to an entirely broad debate regarding eugenics and why it should not be practiced. Authors such as John Harris (2000) argue that intentionally selecting for disability in one’s selfish interest is a case of moral harm, and by bringing a child into this world who has a disability using technology in ways that it was not meant for, it significantly violates the child’s right to an open future (Harris, 2000). It is a known fact, which neither the deaf community itself cannot deny, that people suffering from a hearing loss lead more difficult lives than hearing counterparts, partly because there will always be more hearing people in this world than deaf and there will never be enough accommodations. Loss of hearing, therefore, in such a linguistic society can become dangerous when a deaf person is unable to detect nearby hazards thereby affecting their sense of independence and security and limiting social opportunities. Alternative viewpoints proposed by Albany Lucas (2012) contend that selection for a particular disability is as problematic as selection against, since both are based on the assumption that a single genetic characteristic should be the determining factor in the decision to have a child (Lucas, 2012). Opponents of this point assert that although they value the existence of living disabled individuals and believe in giving these individuals equal respect and opportunities as any other human being, it is morally wrong to knowingly bring a disabled child into the world and limiting their opportunities. In addition, the harm of genetically harming children can be clearly seen when considering how the same harm without genetics involved would be viewed.
Genetics, reproductive technologies and techniques such as PGD are simply tools. Tools are used to accomplish things; whether the use of the tool is ethical depends on what it is that we are trying to accomplish. If something is morally wrong, it does not matter what tools or what method is used to accomplish that, it still remains wrong. In the case of James, who deliberately deafened his first hearing child, by surgically removing his cochlea so he could become a part of their culture, now wants to create a second deaf baby using genetic engineering techniques. Preventing a child from hearing harms the child; it limits and disadvantages the child and therefore should not be permissible for medical personnel to carry on with this kind of procedure, especially for Jimmy and his wife, who are evidently putting their own happiness ahead of their children’s since they disregarded their son’s refusal. Jimmy was 4 years old when he was forced into such an irrational decision, which means he had experienced the hearing world and had therefore chosen to stay in it. All the facts are the same and lets say, via PGD with in vitro fertilization Jimmy and his wife have their congenital deaf child. But now a cure for this deafness is discovered, it is risk free with no side effects, which leads us to think, would the parents, in this case, be right to withhold this cure for deafness from their child? Would the child have any legitimate complaint if they did not cure his deafness? Could this child complain to his parents dismissing him the possibility of being able to listen to music, the sound of trees, the wind, the rain, the waves on the shore, or hearing a spoken word or even learning spoken language? There is no imagining to how the child would feel when it discovers that it lacked these experiences only because of his/her parent’s deliberate denial. Furthermore, it is not plausible to say that all these things that the child could have had, but because of it’s parents decision, are unimportant, so much so that their loss or absence of it is not even considered a disability to them.
Language choice is often used as a primary factor to distinguish members of different groups.
Similarly, deaf community is bonded together via a signed language, American Sign Language (ASL). Although this characteristic is not the sole criterion, it is viewed as a strong distinction between them and the non-deaf community (Singleton & Tittle, 2000). Furthermore, the deaf community includes members with hearing losses at both levels of extreme, from those who are profoundly deaf to those normal hearing children of the deaf community. There are also people who are hard of hearing individuals that identify themselves as part of the deaf community. Therefore, acceptance and integration into the deaf community is depended upon the attitude and the use of ASL, which means that in order to belong to the deaf community, one does not need to be born deaf. Furthermore, hearing children born to deaf parents are considered bilingual and bicultural since they potentially share the language and culture of their deaf parents and they are inevitably members of the hearing community (Singleton & Tittle, 2000). Although there has been some concern regarding signs of spoken language delay observed in hearing children of non-hearing parents, there is not much evidence to support this claim. Therefore, deliberately removing Jimmy’s cochleas was unnecessary since he did not need to be deaf to belong to the Deaf community. Many deaf parents, occasionally have the misguided notion that they should not sign with their child simply because the child is hearing. Signing with the hearing child, from its birth, not only teaches the hearing child to be fluent in ASL, but also it ensures stronger communication between the parents and the child. Moreover, turning normal hearing children to a deaf child overcomes the possibility of having hearing children that are bilingual and bicultural. Schiff-Myers (2004) asserts that many hearing children of deaf parents evidently develop speech and language
normally provided that they have some exposure to normal hearing speakers and if their family life is otherwise normal. In addition, Jimmy and his wife both belong to hearing families, which means there would be enough exposure to normal hearing from the grandparents, and the child would consequently not develop any language delay. In any case, if a hearing child of deaf parents does show signs of spoken language delay, then an appropriate practical plan to enhance the child’s spoken language input would be in order (Schiff-Myers, 2004). James and his wife ought to use the best mode of communication to ensure effective parenting, and to promote natural language acquisition for the child, whether it is spoken or signed language.
“It is a simple fact that it is better to have five senses than four” (Jeanette Winterson). Who can argue against that? Yet, what Winterson calls, a ‘simple fact’ may not be so simple for everyone as clearly illustrated in this paper. This is especially not a simple fact when it comes to the Deaf community. Many facts arise from those who live the deaf lives. One such fact is that they believe being Deaf should be viewed as parallel to being Black, or Hispanic. Another fact is that these Deaf community members feel no objection expanding their community by wanting deaf children, whether it may be through prenatal medical interventions or postnatal surgical procedures. This paper explored the question of whether it is morally justifiable to use genetic technology to ensure the birth of deaf child, putting James and his family into focus. The issue here is not about being supportive of people who are deaf or otherwise disabled. The basic issue is whether or not there are ethical limits to what parents can impose on a child. Pro-choice campaigners and reproductive freedom supports argue that it should be the couple’s choice or wish on how they want to raise their child, but through negative enhancement and achieving outcomes that are socially not preferred affects everyone in the community in general (Karpin, 2008). Morally speaking, parents have a duty to use assisted technology to give their children the best opportunity of the best life, not deliberately reducing the child’s welfare. James and his wife were blessed with a normal hearing baby, who, they believed, was not a part of their world and tried to integrate him via unacceptable means and unethical reasoning. This is not in any way, supposed to generalize among all members of the Deaf community, instead every case should be handled on an individual basis. No reasons can justify intentionally causing a disadvantage that cannot be offset by other advantages and this is exactly what this paper has served to do.
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