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ELSIcon2022 Paper: Mandating Diversity in the Context of Inequity: Re-examining the Research-Care Divide in Precision Medicine Research
ELSIcon2022 • Paper • June 1, 2022 Nicole Foti, Emily Vasquez, Caitlin McMahon, Sandra Soo-Jin Lee, and Janet Shim on behalf of Ethics of Inclusion Study Team There is a diversity deficit in…- Live
- Paper
- Recruiting diverse participants to precision medicine research
- genomics research
- Biobanks
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Publication
Grounded in reality: Integrating community values and priorities of end users in human gene editing
The American Journal of Bioethics -
Publication
From biobank and data silos into a data commons: Convergence to support translational medicine
Journal of Translational Medicine -
Grant Abstract
Programs for the Training and Advancement of the Next GENeration of Native Researchers in Genetics, Ethics and Society
The lack of American Indian and Alaska Native professionals in genomic sciences today highlights the tremendous need for effective training and research programs to prepare the next generation of…- academic program
- Achievement
- Address
- Affect
- Alaska Native
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Publication
Open window: When easily identifiable genomes and traits are in the public domain
PLoS OneDuke University Center for Public Genomics. Grant number(s): P50HG003391 -
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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Publication
Towards precision cancer medicine for Aboriginal and Torres Strait Islander cancer health equity
Medical Journal of Australiaby Justine R Clark (Adnyamathanha), Jessica Buck (Kamilaroi), Amanda Richards-Satour (Adnyamathanha and Barngarla), Louise Lyons (Jaadwa), and Alex Brown (Yuin) -
Publication
Health equity in the implementation of genomics and precision medicine: A public health imperative
Genetics in Medicine -
Publication
Should non-peer-reviewed raw DNA sequence data release be forced on the scientific community?
ScienceDigital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National…