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Research Tool
Hierarchical Mapping Technique
The Hierarchical Mapping Technique, best described in the measures section of the validation included here, enables the collection of information about social network structure using a concentric… -
Research Tool
Perceived Caregiving Interactions and Behaviors: Malfeasance, Nonfeasance, and Uplift Scales
The Perceived Caregiving Interactions and Behaviors: Malfeasance, Nonfeasance, Uplift Scales are used to examine whether levels of nonfeasance, malfeasance, and uplift are associated with the… -
Collection
Ethical, Legal, and Social Implications of Generative AI (GenAI) in Healthcare
The co-evolution of computational processing power and neural network models has made revolutionary developments in generative artificial intelligence (GenAI) possible. One type of GenAI, large…- ELSI
- generative AI
- large language models
- bioethics
- data privacy
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Research Tool
The Parental Personal Utility Scale (Parent PrU)
The Personal Utility Scale (PrU) asks participants to rate how useful they find nineteen outcomes of genome sequencing on a scale ranging from 1 (not at all useful) to 7 (extremely useful). This… -
Collection
Patient Perspectives on Uncertainty in Genomic Medicine
All medical information is subject to uncertainty, but the practice of medical genetics is characterized by unique magnitudes and forms of uncertainty. In fact, for many patients, a “positive”…- variant of uncertain significance
- incidental finding
- patient experience
- clinical decision-making
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Collection
Establishing Gender-Affirming Genetic Counseling Services
Transgender (trans) describes an individual whose gender identity differs from the sex they were assigned at birth. In the U.S., approximately 2.6 million people (~1% of the population) identify as…- TGDI
- gender affirming care
- intersex
- transgender
- gender-diverse
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Research Tool
Race Attributes in Clinical Evaluation (RACE) Scale
Bonham and colleagues developed the Racial Attributes in Clinical Evaluation (RACE) scale to assess the degree to which health professionals employ race in their clinical decision making. The scale… -
Collection
Screening Embryos for Psychiatric Conditions: Public Perspectives, Ethical and Social Issues
The number of genomic loci identified to be associated with psychiatric disorders have substantially increased over the last decade. Alongside developments in polygenic embryo screening (PES; or PGT-…- polygenic embyro screening
- Polygenic risk scores
- Psychiatry
- Reproductive Decision Making
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Funding Opportunity
Ethical, Legal and Social Implications (ELSI) Small Research Grant (R03 Clinical Trial Optional)
- ELSI