Genetic-testing technology is progressing rapidly. The rules need to keep up.
By Editorial Board,
The Washington Post
| 09. 04. 2018
THE SEARCH for the so-called Golden State Killer — who allegedly raped dozens of women and killed at least 12 people in the 1970s and 1980s — had hit a dead end when investigators decided to test DNA evidence from a crime scene against genetic data on GEDmatch, a website of volunteered samples. Eventually, this technique helped investigators close one of the most notorious cold cases in recent history — but it also raised important questions about the privacy rights of customers. How and when should genetic testing companies share data with third parties such as researchers, websites or law enforcement officials? And do companies have an obligation to inform users that their information has been shared?
These concerns were heard in the genetic-testing industry. A number of popular companies, including Ancestry and 23andMe, recently committed to a new set of best practices governing how and when they would collect, use and share customers’ DNA. Among these guidelines are promises that the firms would obtain “separate express consent” from users before sharing their genetic information, use robust information security and...
Related Articles
By staff, Japan Times | 12.04.2025
Japan plans to introduce a ban with penalties on implanting a genome-edited fertilized human egg into the womb of a human or another animal amid concerns over "designer babies."
A government expert panel broadly approved a proposal, including the ban...
By David Jensen, The California Stem Cell Report | 12.11.2025
California’s stem cell and gene therapy agency today approved spending $207 million more on training and education, sidestepping the possibility of using the cash to directly support revolutionary research that has been slashed and endangered by the Trump administration.
Directors...
By Carter Sherman, The Guardian | 12.08.2025
A huge defense policy bill, revealed by US lawmakers on Sunday, does not include a provision that would have provided broad healthcare coverage for in vitro fertilization (IVF) for active-duty members of the military, despite Donald Trump’s pledge...
By Frankie Fattorini, Pharmaceutical Technology | 12.02.2025
Próspera, a charter city on Roatán island in Honduras, hosts two biotechs working to combat ageing through gene therapy, as the organisation behind the city advertises its “flexible” regulatory jurisdiction to attract more developers.
In 2021, Minicircle set up a...