Faculty Mentor
Ashley Mills
Major/Area of Research
Genetic Counseling
Description
Hearing loss, one of the most common birth defects in the United States, affects approximately three to four in every 1,000 newborns. Although hearing loss can be genetic, environmental or a combination of both, genetics accounts for most cases of congenital or early childhood hearing loss. Various cultures, such as the hearing, hard-of hearing, and Deaf cultures, have diverse attitudes toward genetic testing, particularly prenatal genetic testing, for deafness. As one of the core tenets of genetic counseling is a nondirective approach toward patient care, sensitivity to cultural heritage, values, and mediated variation allows the genetic counselor to ensure their patient maintains autonomy, including decisions about reproductive testing options. Children of Deaf Adults (CODAs) are a unique subculture as they are exposed to both hearing and Deaf cultures. As cultural integration plays an important part in the decision-making process for prenatal genetic testing, understanding CODAs’ background, perspective, and involvement in Deaf culture allows a genetic counselor to adapt their counseling approach. This study is the first to analyze the relationship between the level of CODA integration within the Deaf culture and CODAs’ views on prenatal genetic testing for deafness. By using snowball sampling, CODA participants between the ages of 18-55 were surveyed and results will be analyzed using ANOVA statistical analysis. The aim of this study is to deepen genetic counselors’ understanding of and sensitivity to CODAs with respect to reproductive genetic testing for deafness.
Included in
Does Cultural Integration Determine Genetic Testing for Deafness?
Hearing loss, one of the most common birth defects in the United States, affects approximately three to four in every 1,000 newborns. Although hearing loss can be genetic, environmental or a combination of both, genetics accounts for most cases of congenital or early childhood hearing loss. Various cultures, such as the hearing, hard-of hearing, and Deaf cultures, have diverse attitudes toward genetic testing, particularly prenatal genetic testing, for deafness. As one of the core tenets of genetic counseling is a nondirective approach toward patient care, sensitivity to cultural heritage, values, and mediated variation allows the genetic counselor to ensure their patient maintains autonomy, including decisions about reproductive testing options. Children of Deaf Adults (CODAs) are a unique subculture as they are exposed to both hearing and Deaf cultures. As cultural integration plays an important part in the decision-making process for prenatal genetic testing, understanding CODAs’ background, perspective, and involvement in Deaf culture allows a genetic counselor to adapt their counseling approach. This study is the first to analyze the relationship between the level of CODA integration within the Deaf culture and CODAs’ views on prenatal genetic testing for deafness. By using snowball sampling, CODA participants between the ages of 18-55 were surveyed and results will be analyzed using ANOVA statistical analysis. The aim of this study is to deepen genetic counselors’ understanding of and sensitivity to CODAs with respect to reproductive genetic testing for deafness.