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In the Media
People of African ancestry are poorly represented in genetic studies. This effort will change that
The Los Angeles Times |Scientists are setting out to collect genetic material from 500,000 people of African ancestry to create what they believe will be the world’s largest database of genomic information from the…- Pangenome
- African genomics
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In the Media
Family of Henrietta Lacks Settles With Biotech Company That Used Her Cells
The New York Times |Ms. Lacks’s family had accused Thermo Fisher Scientific of profiting from her cells, which have contributed to revolutionary advances in medicine, without seeking their permission.- HeLa
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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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In the Media
The quest for the era of personalised medicine
BBC |The Human Genome Project was supposed to lead to personalised medicine tailored to our DNA. It's finally happening, but it is proving more difficult than anyone could have imagined.- personalized medicine
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In the Media
The search for the world's 'missing' genomes
BBC |Enormous strides have been made to unravel the secrets of the human genome, so why are we missing the genetic information of most of the planet?- Inequality
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In the Media
Forget designer babies. Here’s how CRISPR is really changing lives
MIT Technology Review |The gene-editing tool is being tested in people, and the first treatment could be approved this year.- Gene Editing
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In the Media
Untangling Rosalind Franklin’s Role in DNA Discovery, 70 Years On
The New York Times |Historians have long debated the role that Dr. Franklin played in identifying the double helix. A new opinion essay argues that she was an “equal contributor.”- double helix
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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…