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The impending ubiquity of DNA-sequencing for infants – and the bioethical challenges




A digital representation of the human genome August 15, 2001 at the American Museum of Natural History in New York City. Each color represents one the four chemical compenents of DNA.
A digital representation of the human genome August 15, 2001 at the American Museum of Natural History in New York City. Each color represents one the four chemical compenents of DNA.
Mario Tama/Getty Images

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The ability to study a person’s DNA brings tremendous medical promises, but also poses great ethical challenges.

A federally-funded project that has been studying the impact of gene-sequencing for babies is renewing the debate over these issues, and doing so on an arguably more emotional front.

The project, called Newborn Sequencing in Genomic Medicine and Public Health, is headed by four medical institutions in the country (including UC San Francisco) and has led to questions like whether DNA-sequencing should be mandatory for all infants in the country, and how the technology could lead to its inevitable commercialization and what they could mean for parents and the medical community.

Guests:

Cynthia Powell, M.D., Principal Investigator for one of the four federally-funded Newborn Sequencing in Genomic Medicine and Public Health (NSIGHT) projects; she is a pediatrician, clinical geneticist and genetic counselor and professor of pediatrics and genetics at the University of North Carolina at Chapel Hill School of Medicine

Josephine Johnston, co-lead of the ethics group making ethics and policy recommendations for the federally-funded Newborn Sequencing in Genomic Medicine and Public Health projects; she is the director of research at the Hastings Center, bioethics research institute in New York 

Aaron Kheriaty, M.D., associate professor of psychiatry and director of the Medical Ethics Program at the School of Medicine at UC Irvine