Biology Reference
In-Depth Information
any program that provides genetic testing for deafness. Because of the
existence of the deaf community and the cultural identity of this group,
these discussions are particularly relevant regarding hereditary deafness.
A recent study completed in the United Kingdom by Middleton and
colleagues (1998) examined the attitudes of a group of deaf individuals
towards genetic testing for deafness. A group of 87 deaf individuals filled
out a structured, self-completion questionnaire that included items to assess
preference for having deaf or hearing children, feelings about new discov-
eries in genetics, and whether genetic testing devalued deaf people. Results
indicated predominantly negative attitudes towards genetics and genetic
testing for deafness. The results of the survey provided evidence that many
members of the deaf community are threatened by genetics technology and
feel that it is inappropriate to use such technology for selective termination
of deaf fetuses. While some of the survey participants stated a preference
for deaf children, most said that they were not interested in prenatal diag-
nosis for deafness. Of those who said they would consider prenatal diag-
nosis, 29% said that they would prefer deaf children. Almost half of the
individuals surveyed said they felt that the potential use of genetic testing
devalued deaf people, and 55% felt that genetic testing would do more
harm than good. A much larger study of attitudes of deaf people is in
progress by this group; however, it is clear that, as the authors state, “some
deaf persons may prefer to have deaf children and may consider the use of
genetic technology to achieve this.” There are certain to be great differences
in attitudes among deaf and hard of hearing people which may be strongly
influenced by their degree of hearing loss, age at onset, hearing status of
their parents, their education and socialization, and chosen method of
communication. While some feel it would be wrong to deliberately propa-
gate deafness in their children, others feel that it is only natural to desire
children who will be deaf like themselves.
6. Case Examples
The following cases demonstrate some of the medical and psychosocial
issues that may arise during genetic counseling for deaf individuals. These
cases also illustrate some applications of genetic testing to the clinical sit-
uation. A deaf couple planning a family, a college-aged girl with a syndromic
form of deafness, and a hearing couple with deaf children will be discussed.
6.1 Case 1
M.S. (a 25-year-old white female) and D.S. (a 27-year-old white male) are
a profoundly deaf couple who are self-referred to learn more about
the cause of their deafness and their chances of having deaf or hearing
