Developing successful sign language recognition, generation, and translation systems requires expertise in a wide range of fields, including computer vision, computer graphics, natural language processing, human-computer interaction, linguistics, and Deaf culture. Despite the need for deep interdisciplinary knowledge, existing research occurs in separate disciplinary silos, and tackles separate portions of the sign language processing pipeline. This leads to three key questions: 1) What does an interdisciplinary view of the current landscape reveal? 2) What are the biggest challenges facing the field? and 3) What are the calls to action for people working in the field? To help answer these questions, we brought together a diverse group of experts for a two-day workshop. This paper presents the results of that interdisciplinary workshop, providing key background that is often overlooked by computer scientists, a review of the state-of-the-art, a set of pressing challenges, and a call to action for the research community.Each group focused on the following questions:
This article examines the relationship between cultural affiliation and deaf adults' motivations for genetic testing for deafness in the first prospective, longitudinal study to examine the impact of genetic counseling and genetic testing on deaf adults and the deaf community. Participants (n = 256), classified as affiliating with hearing, Deaf, or both communities, rated interest in testing for 21 reasons covering 5 life domains. Findings suggest strong interest in testing to learn why they are deaf, but little interest in using it for decisions about a partner or having children. Culturally mediated variation was also demonstrated. Deaf and both communities groups viewed testing as useful for more life domains than the hearing community group. Deaf and both communities had similar motivations related to further exploration, understanding, or strengthening of deafness. Motivations related to "hearing" were also relevant for both communities. We conclude that cultural affiliation is an important factor for constructing motivations for genetic testing.
Empirical data on genetic counseling outcomes in the deaf population are needed to better serve this population. This study was an examination of genetics knowledge before and after culturally and linguistically appropriate pre-test genetic counseling in a diverse deaf adult sample. Individuals ≥18 years old with early-onset sensorineural deafness were offered connexin-26/30 testing and genetic counseling. Participants completed questionnaires containing 10 genetics knowledge items at baseline and following pre-test genetic counseling. The effects of genetic counseling, prior beliefs about etiology, and participant’s preferred language on genetics knowledge scores were assessed (n = 244). Pre-test genetic counseling (p = .0007), language (p < .0001), prior beliefs (p < .0001), and the interaction between counseling and beliefs (p = .035) were predictors of genetics knowledge. American Sign Language (ASL)-users and participants with “non-genetic/unknown” prior beliefs had lower knowledge scores than English-users and participants with “genetic” prior beliefs, respectively. Genetics knowledge improved after genetic counseling regardless of participants’ language; knowledge change was greater for the “non-genetic/unknown” beliefs group than the “genetic” beliefs group. ASL-users’ lower knowledge scores are consistent with evidence that ethnic and cultural minority groups have less genetics knowledge, perhaps from exposure and access disparities. Culturally and linguistically appropriate pre-test genetic counseling significantly improved deaf individuals’ genetics knowledge. Assessing deaf individuals’ prior beliefs is important for enhancing genetics knowledge.
Introduction
Deaf American Sign Language-users (ASL) have limited access to cancer genetics information they can readily understand, increasing risk for health disparities. We compared effectiveness of online cancer genetics information presented using a bilingual approach (ASL with English closed captioning) and a monolingual approach (English text).
Hypothesis
Bilingual modality would increase cancer genetics knowledge and confidence to create a family tree; education would interact with modality.
Methods
We used a block 2:1 randomized pre-post study design stratified on education. 150 Deaf ASL-users ≥18 years old with computer and internet access participated online; 100 (70 high, 30 low education) and 50 (35 high, 15 low education) were randomized to the bilingual and monolingual modalities. Modalities provide virtually identical content on creating a family tree, using the family tree to identify inherited cancer risk factors, understanding how cancer predisposition can be inherited, and the role of genetic counseling and testing for prevention or treatment. 25 True/False items assessed knowledge; a Likert scale item assessed confidence. Data were collected within 2 weeks before and after viewing the information.
Results
Significant interaction of language modality, education, and change in knowledge scores was observed (p=.01). High education group increased knowledge regardless of modality (Bilingual: p<.001; d=.56; Monolingual: p<.001; d=1.08). Low education group increased knowledge with bilingual (p<.001; d=.85), but not monolingual (p=.79; d=.08) modality. Bilingual modality yielded greater confidence creating a family tree (p=.03).
Conclusions
Bilingual approach provides a better opportunity for lower educated Deaf ASL-users to access cancer genetics information than a monolingual approach.
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