Deaf people who use American Sign Language (ASL) comprise understudied language and cultural minority groups. Communication and sociocultural barriers largely exclude deaf ASL users from health surveillance and research activities. To advance the knowledge-base related to deaf people and health, we need accessible and effective informed consent processes in order to include deaf ASL users in health research. Barriers to standard written English informed consent include the low English reading ability of many adults deaf since birth or early childhood. Many adults deaf since birth/early childhood also have limited access to ambient information, such as from overheard conversation and radio. The resulting limited """"""""fund of information,"""""""" coupled with low English literacy, renders written English consent forms ineffective for most deaf ASL users. This study will examine three distinct modalities of informed consent communication with deaf adult ASL users and compare their effectiveness using measures of comprehension, willingness to engage in research (post-consent), and trust. The three modalities are: (1) Written English, (2) direct Translation of the same written English consent material into ASL, presented on film featuring one person using ASL, and (3) Dialogic Adaptation of the same written English consent material, presented on film as a dialogue amongst several deaf individuals where the content of their conversation addresses the information from the written English informed consent source document and potential fund of information gaps. Findings from this research will inform research on informed consent with deaf ASL users and other language minority populations, and will pave the way for increased participation of deaf ASL users in health research. This research begins to address the Healthy People 2020 call to expand the knowledge base about determinants of health for people with disabilities. This proposed research will take an approach used with health education materials meant for deaf audiences and apply it to the process of delivering research consent information. The video-based consent modalities evaluated here have implications for consent/assent with other groups, including other language minority groups and those with low literacy, including young children. Public Health Relevance: Health research often excludes deaf people, and information on research risk and consent is often inaccessible to deaf people. By improving research consent with deaf people who communicate in sign language, health researchers will be able to work with deaf sign language users to start to address public health knowledge gaps related to deaf people and health.

National Institute of Health (NIH)
National Center for Advancing Translational Sciences (NCATS)
Linked Specialized Center Cooperative Agreement (UL1)
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Special Emphasis Panel (ZRG1-HDM-B (90))
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Rosenblum, Daniel
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University of Rochester
Public Health & Prev Medicine
Schools of Dentistry
United States
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Enders, Felicity T; Lindsell, Christopher J; Welty, Leah J et al. (2017) Statistical competencies for medical research learners: What is fundamental? J Clin Transl Sci 1:146-152
Clark, Amelia M; DeDiego, Marta L; Anderson, Christopher S et al. (2017) Antigenicity of the 2015-2016 seasonal H1N1 human influenza virus HA and NA proteins. PLoS One 12:e0188267
Zand, Martin S; Trayhan, Melissa; Farooq, Samir A et al. (2017) Properties of healthcare teaming networks as a function of network construction algorithms. PLoS One 12:e0175876
Morse, Diane S; Wilson, John L; McMahon, James M et al. (2017) Does a Primary Health Clinic for Formerly Incarcerated Women Increase Linkage to Care? Womens Health Issues 27:499-508
James, Jennifer; Munson, David; DeMauro, Sara B et al. (2017) Outcomes of Preterm Infants following Discussions about Withdrawal or Withholding of Life Support. J Pediatr 190:118-123.e4
Gao, Lin; Bird, Anna K; Meednu, Nida et al. (2017) Bone Marrow-Derived Mesenchymal Stem Cells From Patients With Systemic Lupus Erythematosus Have a Senescence-Associated Secretory Phenotype Mediated by a Mitochondrial Antiviral Signaling Protein-Interferon-? Feedback Loop. Arthritis Rheumatol 69:1623-1635
Lannan, K L; Spinelli, S L; Blumberg, N et al. (2017) Maresin 1 induces a novel pro-resolving phenotype in human platelets. J Thromb Haemost 15:802-813
Nixon, Daniel E; Bosch, Ronald J; Chan, Ellen S et al. (2017) Effects of atorvastatin on biomarkers of immune activation, inflammation, and lipids in virologically suppressed, human immunodeficiency virus-1-infected individuals with low-density lipoprotein cholesterol <130 mg/dL (AIDS Clinical Trials Group Study A52 J Clin Lipidol 11:61-69
Liu, Yuhang; Zhang, Jinfeng; Qiu, Xing (2017) Super-delta: a new differential gene expression analysis procedure with robust data normalization. BMC Bioinformatics 18:582
Chapman, Lesley M; Ture, Sara K; Field, David J et al. (2017) miR-451 limits CD4+ T cell proliferative responses to infection in mice. Immunol Res 65:828-840

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