Privacy Blog

"Friends don’t let friends get spied on.' – Richard Stallman, President of the Free Software Foundation and longtime advocate of privacy in technology.

DNA

Are You Unknowingly Forfeiting Your Genetic Privacy Rights?

From an article by Katherine M. Silverman, published in the Mondaq.com web site: “The issue of genetic privacy is getting a lot of attention in the media lately, mainly due to the role DNA has played in identifying suspects in prominent “cold cases” like that of the Golden State Killer. But use of these “genetic genealogy” tools has raised concerns from privacy advocates who fear that genetic information shared on […]

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How 23andMe Will Mine its Giant DNA Database for Health and Wealth

Since the launch of DNA testing service 23andMe, around 10 million people have spit a half-teaspoon of saliva into a 23andMe plastic tube and mailed it in to get their ancestry or health-risk results. Nearly 5 million customers did so last year alone, generating an estimated $475 million in revenue for the company, which has yet to turn a profit. It’s also made CEO Anne Wojcicki (No. 33 on this […]

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GEDmatch Implements Required Opt-In for Law Enforcement Matching and Privacy Issues

GEDmatch is an open data personal genomics database and genealogy website founded in 2010 by Curtis Rogers and John Olson. Its main purpose is to help “amateur and professional researchers and genealogists,” including adoptees searching for birth parents. However, it recently has also become “the de facto DNA and genealogy database for all of law enforcement,” according to The Atlantic’s Sarah Zhang. GEDmatch recently gained a lot of publicity after […]

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Ancestry.com Sued for ‘Misleading’ Customers About DNA Data

Genealogy information provider Ancestry.com has a “longstanding practice” of failing to get sufficient informed consent agreements from customers who submit medical and DNA information, a new lawsuit alleges. Lori Collett sued the Utah-based company’s subsidiaries—Ancestry.com DNA LLC and Ancestry.com Inc.—for allegedly “misleading and deceiving patients in California and across the country about what Ancestry was actually doing with their DNA.” Bloomberg news has a brief radio report about the lawsuit […]

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Should Genealogy Websites be BANNED because they ‘Threaten the Anonymity of Sperm Donors?’

The world today is struggling with learning to use advancing technology and also with all sorts of issues dealing with personal privacy. Sometimes those new ideas are diametrically opposed. For instance, which is more important: the right to learn about your ancestry, especially when inherited medical issues are involved, or the right to personal privacy? <img class=”alignright size-full” src=”https://eogn.files.wordpress.com/2018/06/dna-behind-bars.png&#8221; width=”320″ height=”203″ />A bioethics expert at Ghent University in Belgium claims […]

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Researchers Want to Link Your Genes to Your Income but Should They?

The UK Biobank is the single largest public genetic repository in the world, with samples of the genetic blueprints of half a million Brits standing by for scientific study. But when David Hill, a statistical geneticist at the University of Edinburgh, went poring through that data, he wasn’t looking for a cure for cancer or deeper insights into the biology of aging. Nothing like that. He was trying to figure […]

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National Data Privacy Day is January 28

Congress first recognized this day in 2009 to raise awareness about the importance of protecting one’s personal data on the internet. Christi Guerrini J.D., M.P.H., assistant professor with the Center for Medical Ethics and Health Policy at Baylor College of Medicine has written an article calling attention to privacy implications of sharing DNA information. Quoting from the article at http://bit.ly/2RR1rVo: “… thanks especially to last year’s Facebook-Cambridge Analytica scandal, it’s […]

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