The US Urgently Needs New Genetic Privacy Laws

This is an interesting article which summarizes some privacy and legal concerns about DNA in the US. It starts out by reminding us that only a few decades ago, only a few people on Earth had their genomes sequenced, yet today millions of people today have had some type of genetic testing.

To compound things, each of the 50 states has slightly different laws regarding genetic privacy, in addition to federal laws. In general, laws regarding genetic information in the US are narrow, while in Europe genetic privacy is included under broader privacy laws (thereby giving Europeans stronger protections than Americans.)

The article explains how DNA obtained in research or clinical trials has strong protections, but if you add your genetic information into your health records, it can be accessed by insurance agencies and law enforcement agencies without warrants. And if you give your DNA to a private company for analysis, there's basically very few protections.


Some interesting excerpts from the article:

"So Wolf and dozens of other lawyers, doctors, and others in the DNA testing world have spent the past three years assembling a searchable public database of every federal and state law, regulation, official guidance, and professional standard that currently regulates the field of genomics. The project, called LawSeq, is also assessing the field’s biggest legal challenges and seeking a consensus about how policymakers should think about a DNA-rich future. The project, funded by $2 million from the National Institutes of Health, tackles other aspects of genetic data law, but it was the discussion of privacy that dominated the group’s third and final conference in Minneapolis last week, which coincided with the one-year anniversary of the Golden State Killer arrest, using DNA evidence."

[...]

"But scientists have shown over and over that with enough data it’s possible to reattach someone’s name to a string of their genetic code. Besides biomedical research, DNA has been a huge boon to genealogy hobbyists who have uploaded their genetic profiles to public genealogy websites like GEDmatch. Using these open databases to generate maps of distant cousins, it’s now possible to identify just about every white person in America from their DNA alone. Law enforcement agencies have seized on this treasure trove of potential new leads for cracking cold cases—such databases have aided in the arrest of more than 50 suspects in the past 12 months."

https://www.wired.com/story/genome-hackers-show-no-ones-dna-is-anonymous-anymore/


Article: https://www.wired.com/story/the-us-urgently-needs-new-genetic-privacy-laws/
Zac Truesdell, potluck 2/11/2020