Adrian Pecotic, Undark; For Vulnerable Populations, the Thorny Ethics of Genetic Data Collection
To be equitable, genetics research needs more diverse samples. But collecting that data could present ethical issues.
"“When we do genetic studies, trying to understand the genetic basis
of common and complex diseases, we’re getting a biased snapshot,” said
Alicia Martin, a geneticist at the Massachusetts General Hospital and
the Broad Institute, a biomedical and genomics research center
affiliated with Harvard and MIT.
Research to capture these snapshots, called genome-wide association
studies, can only draw conclusions about the data that’s been collected.
Without studies that look at each underrepresented population, genetic
tests and therapies can’t be tailored to everyone. Still, projects
intended as correctives, like All of Us and the International HapMap Project, face an ethical conundrum: Collecting that data could exploit the very people the programs intend to help."
Ethically-tangled aspects of 21st century societies and cultures. In the vein of Charles Darwin’s 1859 “entangled bank” metaphor—a complex and evolving digital ecosystem of difference and dependence, where humans, technologies, ethics, law, policy, data, and information converge and diverge. Kip Currier, PhD, JD
Showing posts with label genetic data collection. Show all posts
Showing posts with label genetic data collection. Show all posts
Wednesday, November 6, 2019
Monday, September 30, 2019
For Vulnerable Populations, the Thorny Ethics of Genetic Data Collection; Undark, September 30, 2019
Adrian Pecotic, Undark; For Vulnerable Populations, the Thorny Ethics of Genetic Data Collection
"Research to capture these snapshots, called genome-wide association studies, can only draw conclusions about the data that’s been collected. Without studies that look at each underrepresented population, genetic tests and therapies can’t be tailored to everyone. Still, projects intended as correctives, like All of Us and the International HapMap Project, face an ethical conundrum: Collecting that data could exploit the very people the programs intend to help."
"Research to capture these snapshots, called genome-wide association studies, can only draw conclusions about the data that’s been collected. Without studies that look at each underrepresented population, genetic tests and therapies can’t be tailored to everyone. Still, projects intended as correctives, like All of Us and the International HapMap Project, face an ethical conundrum: Collecting that data could exploit the very people the programs intend to help."
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