Author ORCID Identifier

0000-0003-2055-1750

Date of Graduation

5-2022

Document Type

Thesis (MS)

Program Affiliation

Genetic Counseling

Degree Name

Masters of Science (MS)

Advisor/Committee Chair

Jennifer Czerwinski

Committee Member

Chelsea Wagner

Committee Member

Laura Farach

Committee Member

Malorie Jones

Committee Member

Rebecca Lunstroth

Committee Member

Caitlin Mauer

Abstract

The Deaf community has previously expressed concerns about the process of genetic counseling/testing and the potential implications it can have for Deaf individuals. Prior studies have explored the motivations of Deaf individuals for pursuing genetic testing related to deafness; however, information regarding the interest and motivations for indications other than deafness is limited. Our study aims to characterize attitudes of individuals within the d/Deaf community towards genetic counseling and testing and to assess interest and motivations to seek genetic counseling for indications other than deafness.

Individuals were recruited through local and national d/Deaf organizations to participate in an anonymous, online survey. Of the 54 responses, 61% identified with the Deaf community. Thirty percent indicated having prior experience with genetic counseling and testing. Overall scores of satisfaction were consistent with most participants being satisfied with their sessions. Both individuals with prior experiences and individuals without experience expressed interest in genetic counseling about a variety of indications, although individuals still seemed to feel overall neutral towards genetic counseling and testing. Surprisingly, 60% of individuals who identified with the Deaf community agreed with the statement that deafness is a disability.

These findings indicate that despite literature and generalizations about the Deaf community and their beliefs, these views may not be representative of all Deaf patients and can further damage rapport and trust if wrongly assumed. To overcome the decades of distrust and injustices, healthcare providers need to engage in culturally competent, patient-centered care, especially in historically marginalized communities like the d/Deaf community.

Keywords

d/Deaf, Deaf community, Community identity, Genetic counseling, Genetic testing, Satisfaction, Attitudes, Disability

Available for download on Friday, April 28, 2023

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