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Research Tool
Genetic Genealogy Experiences Survey
Guerrini and colleagues designed the Genetic Genealogy Experiences Survey to gather information about the experiences of users of genetic relative-finder services offered by direct-to-consumer… -
Research Tool
Decision Tree to Assist with Self-Regulation of CRISPR Basic Research
Courtright-Lim designed this decision tree to help researchers, funding agencies, institutional review boards, and ethics committees determine when social interventions may result in a better use of… -
Research Tool
Consent Form, All of Us Research Program
This consent form is utilized by the All of Us Research Program (All of Us), a health research program, funded by the National Institutes of Health, that will study health data from over one million… -
Research Tool
HIPAA Authorization for Research–Electronic Health Record Supplement, All of Us Research Program
This form includes information for participants and collects a consent for the the All of Us Research Program (All of Us) to access to their electronic health records. All of Us is a health research… -
Research Tool
Vignette for Exploring the Importance of Shared Decision Making about Genomic Research Participation
Bukini and colleagues designed the vignette used in theis study to explore the importance of shared decision making about research participation in Ghana and Cameroon. The vignette, available in the… -
Research Tool
Attitudes of Parents of Sickle Cell Anemia (SCA) Affected Children Toward Prenatal Diagnosis of SCA Survey
Wonkam and colleagues designed this survey to gather information about how Cameroonian parents with SCA-affected children feel towards prenatal diagnosis and termination of an affected pregnancy. -
Research Tool
Gene Modification Therapy Scenarios for Parents of People with Down Syndrome
Michie and Allyse developed five scenarios that describe existing and hypothetical interventions for symptoms of Down syndrome (DS): 1) prenatal physical intervention, 2) prenatal cognitive… -
Research Tool
Prenatal Diagnoses of Sex Chromosome Aneuploidies Interview Guide
This semi-structured interview guide is intended for use with individuals diagnosed with a sex chromosome aneuploidy (SCA) or with parents of a child diagnosed with a SCA. It employs open-ended… -
Research Tool
Health Data Exploration Survey Questions (Individuals)
To understand challenges involved in the use of personal health data (PHD) in research, Bietz and colleagues created Health Data Exploration Survey Questions (Individuals) that examines the… -
Research Tool
Health Data Exploration Survey Questions (Researchers)
Bietz and colleagues created the Health Data Exploration Survey Questions (Researchers) to examine the experiences with and attitudes about self-tracking data among researchers who could potentially…