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Research Tool
Interview Guide: Diverse Parental Perspectives of the Social and Educational Needs for Expanding Newborn Screening through Genomic Sequencing
Timmins and colleagues created this semi-structured interview guide to explore parents' perspectives on expanded newborn screening through genomic sequencing. Questions explore parent's… -
Research Tool
The Public Understanding and Attitudes towards Genetics and Genomics (PUGGS) Questionnaire
Carver and colleagues developed the Public Understanding and Attitudes towards Genetics and Genomics (PUGGS) questionnaire to assess college students' knowledge of genetics, including gene-… -
Research Tool
How Does Genetic Ancestry Testing Affect Perceptions of Race? Conjoint Survey Instrument
The Conjoint Survey Instrument is a survey instrument developed for the study “How Does Genetic Ancestry Testing Affect Perceptions of Race?” The study explores how respondents make racial… -
Research Tool
Black-White Race Morphs Research Tool
The Black-White Race Morphs Research Tool is a resource comprised of 240 morphed images combining same-gender Black and White face images. The research tool uses original images from the Chicago Face… -
Collection
The Evolution of Race and Population Identifiers in Scientific Thought and Practice
The fields of genetics and genomics are at a historically significant crossroads. After more than a century of criticism concerning the use of racial categories in human biological research (by a…- scientific racism
- population identifiers
- NASEM
- colonialism
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Collection
Dataveillance and Human Rights
Nearly 75 years ago, countries agreed to an International Bill of Human Rights, that included, among other fundamental rights, a right to privacy, a right to science, and a right to health. Cohesive…- data privacy
- data justice
- public health surveillance
- HIPAA
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Collection
Paying for Cures: The Ethics and Economics of Gene Therapies for Rare Diseases
Rare diseases, most of which have a genetic basis, collectively affect an estimated 300 million individuals worldwide and are associated with significant morbidity and mortality. Although less than…- gene therapy
- sickle cell disease
- health economics
- nusinersen
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Collection
The Disability Rights Critique of Technologies that Eliminate Human Genetic Variation
The development and use of an expanding range of medical technologies that yield genetic information about embryos and fetuses has raised ethical questions about whether and how this increasingly… -
Research Tool
ELSI Research Methods Questionnaire
Cho and colleagues created this questionnaire to understand the research methodologies currently being used in the study of the ethical, legal, and social implications (ELSI) of genetics and genomics. -
Collection
How Do We Diversify Human Genomics Research?
The lack of diversity in human genomics research and reference datasets is a known problem, with real-life consequences, but the path forward remains elusive. Solutions to the problem of sampling…- genetic diversity
- Admixture
- anti-racism
- FAIR data principles