PROJECT NARRATIVE A number of US employers are offering their employees confidential workplace genomic testing (wGT), a service that could inform employees of their genetic risk for certain treatable diseases but may also raise concerns about genetic privacy and workplace discrimination.
PROJECT NARRATIVE Consumer protections are of rising importance to the sustainability of personal genomics and mobile health industries and realization of precision health, yet the extent of consumer protections available from the Federal Trade Commission (the primary federal agency in the United States responsible for ensuring online privacy and data security beyond medical settings, for the prevention of unfair and deceptive trade practices of companies that might not be governed by HIPAA, and for promoting innovation) are poorly characterized and have received surprisingly little ELSI re
PROJECT NARRATIVE At least 15% of children with cancer have an underlying genetic cause of their cancer, requiring significant counseling regarding therapy modifications, cancer surveillance, and lifestyle changes for both the patient and their family. There is a shortage of qualified genetic counselors available to meet with these families, especially in the stressful setting of cancer diagnosis.
Project Narrative Studies suggest that distrust is a major barrier for participation of minorities in Precision Medicine Research (PMR), though no study has examined the sources of (dis)trust and factors affecting views on trustworthiness of PMR among people with disabilities. This study proposes to engage with people with mobility, visual and hearing disabilities?the most common conditions in the U.S.?across racial/ethnic communities and with translational genomic researchers, the leaders in PMR, to close this gap.
This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process of precision medicine research. The video series was developed for the VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research, with health communications experts at Booster Shot Media. In the VALUES project, the videos were shown ahead of focus group discussions with a multilingual set of research participants about the use of their EHR data and biospecimens in precision medicine research.
This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process of precision medicine research. The video series was developed for the VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research, with health communications experts at Booster Shot Media. In the VALUES project, the videos were shown ahead of focus group discussions with a multilingual set of research participants about the use of their EHR data and biospecimens in precision medicine research.
This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process of precision medicine research. The video series was developed for the VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research, with health communications experts at Booster Shot Media. In the VALUES project, the videos were shown ahead of focus group discussions with a multilingual set of research participants about the use of their EHR data and biospecimens in precision medicine research.
This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process of precision medicine research. The video series was developed for the VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research, with health communications experts at Booster Shot Media. In the VALUES project, the videos were shown ahead of focus group discussions with a multilingual set of research participants about the use of their EHR data and biospecimens in precision medicine research.
This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process of precision medicine research. The video series was developed for the VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research, with health communications experts at Booster Shot Media. In the VALUES project, the videos were shown ahead of focus group discussions with a multilingual set of research participants about the use of their EHR data and biospecimens in precision medicine research.