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Research Tool
Which Medication is Best? (Video), Attitudes about the Ethics of Research on Medical Practices (RoMP)
This 3 minute video was utilized in the ROMP study, which assessed adult patient's attitudes toward research on medical practices in the context of usual care. The video explains the influences… -
Research Tool
IRB Member Focus Group Guide, Attitudes about the Ethics of Research on Medical Practices (RoMP)
This focus group guide assesses the perspectives of IRB professionals toward research on medical practices within usual care. It was utilized in the ROMP study for focus groups conducted for the… -
Research Tool
General Population and Patient Survey, Attitudes about the Ethics of Research on Medical Practices (RoMP)
This self-administered, web-based survey using an experimental between-group design to compare the effects of four informational aids on respondents’ understanding of core aspects of research on… -
Research Tool
Genome Empowerment Scale (GEmS)
The GEmS can be used to assess the genomic healthcare empowerment of parents (e.g., the meaning of a diagnosis for their child, emotional management of the process, their confidence in utilizing the… -
Research Tool
Optional Results Choice Aid (ORCA)
The Optional Results Choice Aid (ORCA) is a decision aid to support informed, values based decision-making for adult patients and research participants about the reciept of medically actionable,… -
Research Tool
Assessment of Strategic Integration of Genomics across Nursing (ASIGN) Maturity Matrix
The Assessment of Strategic Integration of Genomics across Nursing (ASIGN) maturity matrix (MM) is a self-assessment tool that enables users to asesses the progress of their country, city, or… -
News
CERA Working Groups - Call for Proposals
The Center for ELSI Resources and Analysis (CERA) is an interdisciplinary center that connects scientists, scholars, policymakers, journalists and the general public with information about the…- working group
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News
Informed Consent in Genomic Medicine – Strengthening Assessment, Ethical Resilience, Practice
The GE2P2 Global Foundation – a 2016 spin-off from the Division of Medical Ethics, NYU School of Medicine – has launched a multi-year initiative to assess and materially strengthen informed consent…- genome informed consent
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News
NIH Requests Information on Developing Consent Language for Future Use of Data and Biospecimens
On July 1, 2021 the National Institutes of Health (NIH) announced a Request for Information (RFI) on the utility and useability of Consent for Data and Biospecimen Sharing for Future…- Consent
- data and biospecimens consent
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Research Tool
Manual for Deliberative Focus Group Discussions (dFGDs) on Feedback of Individual Findings in Genomic Research among Lay Individuals who have Participated in Genomics Research
The Manual for Deliberative Focus Group Discussions (dFGDs) on Feedback of Individual Findings in Genomic Research was originally developed for use among adults and adolescents enrolled in genomics…