California Considers DNA Privacy Law
By Helen Shen,
Nature
| 05. 18. 2012
California lawmakers are weighing a bill aimed at protecting their state's citizens from surreptitious genetic testing but scientists are voicing their growing concerns that, if passed, such a law would have a costly and damaging effect on research.
The bill, dubbed the Genetic Information Privacy Act, would require an individual’s written consent for the collection, analysis, retention, and sharing of his or her genetic information—including DNA, genetic test results, and even family disease history.
“It’s becoming easier and quicker and cheaper for people to obtain their genetic profile or genetic information,” says the bill’s author, California state Senator Alex Padilla. “It’s such sensitive and personal information that it ought to be protected,” he says. Padilla also authored an earlier bill, enacted in January, which extended federal protections against genetic discrimination.
Under the newly proposed bill, a person’s genetic information may only be accessed by individuals specifically named on a consent form, and only for purposes written on the form. Genetic information along with the original samples must be destroyed once their specified purposes are fulfilled.
Such requirements could seriously hinder...
Related Articles
By Pallab Gosh and Gwyndaf Hughes, BBC News | 06.26.2025
Work has begun on a controversial project to create the building blocks of human life from scratch, in what is believed to be a world first.
The research has been taboo until now because of concerns it could lead to...
Since the “CRISPR babies” scandal in 2018, no additional genetically modified babies are known to have been born. Now several techno-enthusiastic billionaires are setting up privately funded companies to genetically edit human embryos, with the explicit intention of creating genetically modified children.
Heritable genome editing remains prohibited by policies in the overwhelming majority of countries that have any relevant policy, and by a binding European treaty. Support for keeping it legally off limits is widespread, including among scientists...
By Ron Leuty, San Francisco Business Times | 06.16.2025
23andMe's two-step sale to a nonprofit led by former CEO Anne Wojcicki is nothing more than a dance around California's genetic privacy law, state Attorney General Rob Bonta said in a filing late Monday, one day before a judge will...
By Ed Cara, Gizmodo | 06.22.2025
In late May, several scientific organizations, including the International Society for Cell and Gene Therapy (ISCT), banded together to call for a 10-year moratorium on using CRISPR and related technologies to pursue human heritable germline editing. The declaration also outlined...