Biology Reference
In-Depth Information
encouraged to absorb as much medical and genetic information as they can
understand, consider possible courses of action, and begin the decision-
making process for any choices that must be made. Arrangements for
professional sign language or oral interpreters will be made for deaf and
hard of hearing children or adults who require these services. It is impor-
tant in genetic counseling situations that family members not be used as
interpreters. Genetic counselors are also given training in providing infor-
mation in a non-directive fashion that is sensitive to different reproductive
preferences or cultural differences. This is an especially important con-
sideration when providing counseling to deaf individuals (Arnos et al.
1991). In providing non-directive counseling for deaf couples, for example,
genetic counselors must be aware that word choice can convey cultural bias.
Use of the word “chance” instead of “risk” for having a deaf or hearing
child is neutral terminology. The use of such terminology enhances open-
ness and communication because it implies that assumptions are not being
made about how the couple may feel about having deaf or hearing children.
Other examples include the use of the terms “deaf,” “hard of hearing,” and
“hearing” when referring to family members instead of the medicalized
terms “affected” and “unaffected.”
The genetic counseling session may take place during one visit or may
require several visits. Some families are seen for follow-up counseling to
assess changing medical aspects, psychosocial concerns, or new advances
in genetic screening and testing. Because of the differing needs of families,
genetic counseling sessions are unique to every family in terms of content,
approach, and types of support provided. Many families can benefit from
referrals to support groups, communication specialists, or educators, par-
ticularly parents with a young deaf child who need guidance regarding
communication and educational options and opportunities to network with
other parents of deaf children. Genetic counselors often work together with
audiologists, social workers, and psychologists to assist families in obtain-
ing this type of information.
4. Recurrence Risks/Empirical Risk Estimates
The genetic counselor will often need to rely on empirical risk estimates
when informing families about recurrence risks. For hearing parents whose
first child is deaf due to an etiology that cannot be determined after genetic
evaluation, and who otherwise have a negative family history, an empiri-
cal risk estimate of 9% would be given. A deaf couple would be given an
empirical risk of 10% for their first child to be deaf, given that an etiology
could not be determined in either of them. Empirical risks are also help-
ful in many other situations (Bieber and Nance, 1979). However, the ability
to provide accurate information regarding recurrence risks to hearing
parents of a single child with hearing loss and to adults with hearing loss
