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Research Tool
Preferences Instrument for Genomic Secondary Results (PIGSR)
The PIGSR is a brief instrument that enables adult respondents the ability to express their preferences or opt out of getting secondary results. It is designed to be completed prior to testing… -
Research Tool
Misattributed Paternity Questionnaire
Lowe and colleagues developed a questionnaire containing two scenarios in which misattributed paternity is incidentally discovered, possible courses of action for the doctor in each scenario, and a… -
Research Tool
Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS)
Peshkin and colleagues developed and tested the Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS) to assess parental attitudes about and interest in testing their minor children for BRCA 1/2… -
Research Tool
Whole Genome Sequencing and You
“Whole Genome Sequencing and You” is a 10-minute educational animated video about whole-genome sequencing for research participants, patients, and the general public. -
Research Tool
Genetic Literacy Survey
Abrams and colleagues designed the Genetics Literacy Survey to gather information about how the public understands genomics and applies their knowledge in everyday scenarios beyond medical settings,… -
Research Tool
The Colored, Eco-Genetic Relationship Map (CEGRM)
Kenen and Preters designed the Colored Ecological and Genetic Relational Map (CEGRM), a pictoral map used to organize information about client relationships with biological and non-biological kin,… -
News
The Sulston Project: Making the Knowledge Commons for Interpreting Inherited Cancer Risk More Effective
The Sulston Project is a joint research effort at Arizona State University and Baylor College of Medicine named after John Sulston, the champion of open science who, with Bob Waterston, crafted the…- Genetic Data Sharing and Management
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News
Corporate wellness programs, a threat to privacy?
Genetic testing is increasingly offered as a benefit in employer-sponsored health and wellness programs. Despite rapidly growing popularity of wellness programs, there is little evidence to support…- Genetic Testing
- Wellness programs
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News
Albert R. Jonsen, PhD (1931-2020) Foundational Scholar of Bioethics
Albert R. Jonsen, PhD (1931-2020), a foundational figure and scholar in bioethics, died at his home in San Francisco on October 21, 2020. His extraordinary contributions to the field of…- Al Jonsen
- Bioethics History
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News
The Forefront of Genomics: ELSI and NHGRI’s 2030 Strategic Vision
After two years of planning, the NHGRI released its 2030 “Strategic vision for improving human health at The Forefront of Genomics.” published in Nature on October 28, 2020. Acknowledging the…- National Human Genome Research Institute
- NHGRI 2030 Strategic Vision