Short Wave The Dubious Consent Question At The Heart Of The Human Genome Project
Jul 15, 2024
Ashley Smart, a Senior editor at Undark magazine known for her investigative work on the Human Genome Project, discusses the ethical concerns surrounding DNA donation. She reveals that over two-thirds of the project's genetic information comes from a single unconsented donor, known as RP11. This reliance raises critical questions about consent and representation, particularly for marginalized communities. Smart emphasizes the importance of transparency and ethics in genetics, pushing for informed discussions on the implications of such decisions.
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One Donor's Genome
- The Human Genome Project initially aimed for a mosaic genome from multiple donors.
- It shifted to using one donor (RP11) for 70% of the sequence due to technical issues and time pressure from private competition.
Genome Sequencing's Power
- Sequencing the human genome promised better disease understanding and tailored treatments.
- It launched a new era in biology, changing how we understand living things.
DNA Cloning and Distribution
- DNA was fragmented, cloned in bacteria, and distributed to researchers worldwide.
- This allowed for simultaneous work and cross-validation, accelerating the project.