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 Vittoria Vardanega, SWI swissinfo.ch | 02.13.2026
In recent years, sperm donation has produced family trees of unprecedented size, stretching across countries and, in some cases, continents. Stories of “mass donors” have captured public attention, most recently through the Netflix documentary series, The Man with 1,000 Kids...
By Jonathan D. Moreno, Hastings Center Bioethics Forum | 02.09.2026
When I began to write a book about bioethics and the rules-based international order, the idea that the world was facing the greatest geopolitical change since World War II was uncontroversial for those who were paying attention to such esoterica...
By Zachary Brennan, Endpoints News | 02.23.2026
The FDA is spelling out the details of a new pathway to help speed personalized cell and gene therapies to market for rare diseases.
Monday’s long-awaited draft guidance outlines the agency’s “plausible mechanism” framework, a pathway FDA Commissioner Marty Makary...
By David Jensen, California Stem Cell Report | 02.10.2026
Touchy issues involving accusations that California’s $12 billion gene and stem cell research agency is pushing aside “good science” in favor of new priorities and preferences will be aired again in late March at a public meeting in Sacramento.
The...