New CRG Report: Genetic Privacy and Non-Forensic Biobanks
By Council for Responsible Genetics,
Council for Responsible Genetics
| 08. 12. 2014
The current structure of biobanks in the United States is missing substantial federal and state policies to address and resolve people’s privacy concerns as well as sufficient education for people about the laws that are there to protect their genetic privacy. Medical, research, and commercial DNA databases all generate privacy concerns largely because of the misunderstanding between what people anticipate from giving their genetic information to these biobanks and what actually occurs. Because of the various risks that are associated with non-forensic biobanks, it is necessary to have stringent regulations and federal oversight so that scientists may be able to use donated genetic data to research diseases without compromising the genetic privacy of donors as well as their close relatives.
The new CRG report: Do You Know Where Your DNA Is? Genetic Privacy and Non-Forensic Biobanks explores the various forms of biobanks in the US, their privacy limitations, the current state of regulation and the need for reform.
The report can be accessed at the following link and on the homepage of the CRG website: http://www.councilforresponsiblegenetics.org/pageDocuments/L0Z6I8MLM3.pdf
Related Articles
By Jason Kehe, Wired | 04.11.2024
God help the babies! Or, absent God, a fertility startup called Orchid. It offers prospective parents a fantastical choice: Have a regular baby or have an Orchid baby. A regular baby might grow up and get cancer. Or be born...
By Neel Shah, The PrePrint | 04.11.2024
Years ago, I interviewed for a residency position at The Johns Hopkins Hospital in Baltimore. Standing before the domed Victorian building at the campus entrance, I couldn’t help but be in awe of the history of the place, the great...
By Judith Levine, The Intercept | 04.04.2024
WHEN THE ALABAMA Supreme Court ruled that fertilized embryos were “extrauterine children,” it did more than imperil the future of in vitro fertilization in Alabama and, potentially, the U.S. The ruling, on the claimed “wrongful death” of frozen embryos...
By Justin McCurry, The Guardian | 04.01.2024
A Chinese scientist who was imprisoned for his role in creating the world’s first genetically edited babies says he has returned to his laboratory to work on the treatment of Alzheimer’s and other genetic diseases.
In an interview with a...