Essay On Deafness And Genetic Testing
Genetic engineering, or eugenics, is another proposed method of correcting Deafness which arouses much anger and controversy in the Deaf community. Deafness has a variety of root causes, and its genetics are complicated, but is known that for some people, it is caused by the gene connexin 26, as well as many other recessive, harder-to-trace genes (Leigh 49). Diagnostic testing of a Deaf or Hard of Hearing baby is becoming routine, but it is prenatal testing that inflames both the Deaf and Hearing communities. Genetic testing can determine whether a baby may be disabled, Deaf, or otherwise different, and can give parents the chance to make an informed decision about next steps. There are many examples of hearing people who wish only to have a hearing children, and Deaf people wishing to have
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only Deaf children, and genetic testing gives both sides reproductive options they wouldn’t have had in an earlier time, opening doors to complicated and impassioned debates. Alexander Graham Bell, most widely known for the invention of the telephone, was also the most influential supporter of eugenics, as well as for oral schooling, which will be discussed later. Eugenics is defined as, “the study of or belief in the possibility of improving the qualities of the human species or a human population, especially by such means as discouraging reproduction by persons having genetic defects or presumed to have inheritable undesirable traits (negative eugenics) or encouraging reproduction by persons presumed to have inheritable desirable traits (positive eugenics) (Dictionary). In For Hearing People Only, which is essentially a guide to the Deaf community written by Deaf people for hearing people, it says, “According to Gallaudet University historians John Van Cleve and Barry Crouch, “Bell believed that deafness was a terrible curse… a pathological aberration “that “perpetuated negative genetic traits… that deaf persons weakened the society in which they lived” (FHPO, Vol.1, pg. 386). Bell wanted to do whatever was necessary to keep Deaf children from being born, including banning intermarriage between Deaf adults, and some of his more radical peers proposed the idea of sterilization. The Deaf community has extremely strong views towards Bell and his methods, and he is portrayed as a villain. His foundation, the Alexander Graham Bell Association for the Deaf and Hard of Hearing, which continues to provide financial support towards speech therapy and oral schools, seems to have made certain that there is limited access to information on these views or negative statements surrounding genetic engineering of the Deaf. The eugenics movement as a whole was widely known in the late 1800s and was in practice up until the ethnic cleansing of Hitler and the Nazis, which attempted to “purify” the Aryan race through euthanasia (killing) and sterilization, ridding of all “life unworthy of life,” including Deaf people, along with the blind, homosexual, cognitively and physically disabled, people. Although the push for has died down, to this day there are those who advocate for genetic engineering to achieve desired characteristics, or weed out undesirable characteristics. This advanced science can be beneficial in selecting or altering embryos so that they are free of defects or diseases like cystic fibrosis, the “bubble boy” disease and diabetes through in vitro fertilization, a process colloquially known as creating “designer babies” (Effects of...). This process has its benefits, and it today it is used and can be seen as a medical breakthrough but to some, specifically regarding the elimination of Deaf embryos, it is truly an atrocity. Many in the Deaf community, as well as the disabilities community, see it as a way of devaluing the lives of people who are already born with these so-called “undesirable” characteristics, and essentially saying that the world is better off without their existence. Additionally, this can have emotional and social risks to parents who choose to use genetic engineering, stated by a website about genetics created by the University of San Diego Biology Department: Parents who want to have a child without pursuing genetic testing may feel guilty if the child is born with any health problems. Additionally, some are concerned about what an overemphasis on eliminating disabilities in unborn children will mean for people who already have the disability. (Is Eugenics…)
There are many potential medical and environmental risks to genetic engineering as well.
Some fears include the potential for human destruction, the inability to reverse the alterations, the uncertainty of what problems will arise as a result (Effects Of…).
The desire to genetically alter the human genome to eradicate Deafness yet again shows a deep-seated need to correct what is different. What is seen as an amazing way to prevent disease by the medical community is seen as cultural genocide by the Deaf community. The willingness of humanity to interfere with nature and biodiversity is frightening, because of the message it sends about the way our society views diversity as well as the fact that its long-term effects are irreversible and still largely unknown. Some people have had personal success where genetic engineering has helped them prevent devastating health problems, but it is important to understand that no person can make that decision for someone else, as is often done when destroying the “defective” embryo, without consent from the parents. Not every difference requires a “fix,” and that sometimes difficulties that arise are the fault of society, not
biology.
only Deaf children, and genetic testing gives both sides reproductive options they wouldn’t have had in an earlier time, opening doors to complicated and impassioned debates. Alexander Graham Bell, most widely known for the invention of the telephone, was also the most influential supporter of eugenics, as well as for oral schooling, which will be discussed later. Eugenics is defined as, “the study of or belief in the possibility of improving the qualities of the human species or a human population, especially by such means as discouraging reproduction by persons having genetic defects or presumed to have inheritable undesirable traits (negative eugenics) or encouraging reproduction by persons presumed to have inheritable desirable traits (positive eugenics) (Dictionary). In For Hearing People Only, which is essentially a guide to the Deaf community written by Deaf people for hearing people, it says, “According to Gallaudet University historians John Van Cleve and Barry Crouch, “Bell believed that deafness was a terrible curse… a pathological aberration “that “perpetuated negative genetic traits… that deaf persons weakened the society in which they lived” (FHPO, Vol.1, pg. 386). Bell wanted to do whatever was necessary to keep Deaf children from being born, including banning intermarriage between Deaf adults, and some of his more radical peers proposed the idea of sterilization. The Deaf community has extremely strong views towards Bell and his methods, and he is portrayed as a villain. His foundation, the Alexander Graham Bell Association for the Deaf and Hard of Hearing, which continues to provide financial support towards speech therapy and oral schools, seems to have made certain that there is limited access to information on these views or negative statements surrounding genetic engineering of the Deaf. The eugenics movement as a whole was widely known in the late 1800s and was in practice up until the ethnic cleansing of Hitler and the Nazis, which attempted to “purify” the Aryan race through euthanasia (killing) and sterilization, ridding of all “life unworthy of life,” including Deaf people, along with the blind, homosexual, cognitively and physically disabled, people. Although the push for has died down, to this day there are those who advocate for genetic engineering to achieve desired characteristics, or weed out undesirable characteristics. This advanced science can be beneficial in selecting or altering embryos so that they are free of defects or diseases like cystic fibrosis, the “bubble boy” disease and diabetes through in vitro fertilization, a process colloquially known as creating “designer babies” (Effects of...). This process has its benefits, and it today it is used and can be seen as a medical breakthrough but to some, specifically regarding the elimination of Deaf embryos, it is truly an atrocity. Many in the Deaf community, as well as the disabilities community, see it as a way of devaluing the lives of people who are already born with these so-called “undesirable” characteristics, and essentially saying that the world is better off without their existence. Additionally, this can have emotional and social risks to parents who choose to use genetic engineering, stated by a website about genetics created by the University of San Diego Biology Department: Parents who want to have a child without pursuing genetic testing may feel guilty if the child is born with any health problems. Additionally, some are concerned about what an overemphasis on eliminating disabilities in unborn children will mean for people who already have the disability. (Is Eugenics…)
There are many potential medical and environmental risks to genetic engineering as well.
Some fears include the potential for human destruction, the inability to reverse the alterations, the uncertainty of what problems will arise as a result (Effects Of…).
The desire to genetically alter the human genome to eradicate Deafness yet again shows a deep-seated need to correct what is different. What is seen as an amazing way to prevent disease by the medical community is seen as cultural genocide by the Deaf community. The willingness of humanity to interfere with nature and biodiversity is frightening, because of the message it sends about the way our society views diversity as well as the fact that its long-term effects are irreversible and still largely unknown. Some people have had personal success where genetic engineering has helped them prevent devastating health problems, but it is important to understand that no person can make that decision for someone else, as is often done when destroying the “defective” embryo, without consent from the parents. Not every difference requires a “fix,” and that sometimes difficulties that arise are the fault of society, not
biology.