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How to delete your DNA from popular genetics sites - The Parallax
DNA testing kits were priced to fly off the shelves this past holiday season, despite warnings from medical professionals and privacy experts.
The kits, popular for helping people learn about potential future medical complications and their ancestry, also have been used to identify alleged murderers. A Sacramento, Calif., man was arrested and charged with 12 counts of murder in 2018 thanks to a little-known genealogical website.
Authorities working to crack the case of the Golden State Killer built an online genealogical profile using DNA from a decades-old crime scene, then used it to find distant relatives with matching genetic profiles.
“There’s a big difference between deleting data versus destroying a sample.”
—James Hazel, postdoctoral research fellow, Center for Genetic Privacy and Identity in Community Settings, Vanderbilt University Medical Center
The breakthrough led to the long-sought capture of an infamous alleged murderer and rapist. It also surfaced ethical and privacy issues surrounding direct-to-consumer genetic-testing companies. Among them: How do they use and store your DNA samples and the data they generate. And how easy is it to delete and destroy those samples and the resulting genealogical profiles?
According to James Hazel, a postdoctoral research fellow at the Center for Genetic Privacy and Identity in Community Settings at Vanderbilt University Medical Center, those answers aren’t very clear.
“There’s tremendous variability in these companies’ policies across the industry,” he says. “Some are very comprehensive, while others provide little to no information.”
In a research paper he co-authored on direct-to-consumer genetic-testing companies and their privacy policies, Hazel found that nearly 40 percent had no specific policies in place that applied to testing practices. Of those that did, 29 percent had a policy that addressed destroying samples, though many said destroyal would be carried out according to the laboratory’s standard operating procedures, or as required by a certifying or accrediting agency. Few distinguished between the physical DNA sample and the extracted data.
Just 9 percent stated that a consumer could delete all genetic data possessed by the company, according to the report. Hazel said deleting genetic data is quite difficult.
“There’s a big difference between deleting data versus destroying a sample,” he says. “More companies today use CLIA [Clinical Laboratory Improvements Act]-certified labs, which may retain test results for 2 to 10 years for quality control purposes,” he explains. Retention policies surrounding summary statistical data that has been de-identified aren’t necessarily a cause for privacy concerns, he says, but they might when applied to sets of individual, personally identifiable data.
The booming popularity of these direct-to-consumer genetic tests—and their murky policies—should give consumers pause, Hazel says. Before purchasing one or registering one you received as a gift, read the privacy policy and terms of service to ensure that you understand its data practices, he suggests. Look for details that explain what happens with the data, with whom it’s shared, and whether you have the opportunity to opt into or out of sharing your data for research purposes.
Here’s a look at five popular genetic testing companies and how to delete your data or have your sample destroyed.
data  database  DNA  family  genealogy  privacy  security  test 
7 days ago by rgl7194
Long-Range Familial Searching Forensics - Schneier on Security
Good article on using long-range familial searching -- basically, DNA matching of distant relatives -- as a police forensics tool.
DNA  privacy  security  family  police  genealogy  data 
15 days ago by rgl7194
What DNA testing kit companies are really doing with your data - Malwarebytes Labs | Malwarebytes Labs
Sarah* hovered over the mailbox, envelope in hand. She knew as soon as she mailed off her DNA sample, there’d be no turning back. She ran through the information she looked up on 23andMe’s website one more time: the privacy policy, the research parameters, the option to learn about potential health risks, the warning that the findings could have a dramatic impact on her life.
She paused, instinctively retracting her arm from the mailbox opening. Would she live to regret this choice? What could she learn about her family, herself that she may not want to know? How safe did she really feel giving her genetic information away to be studied, shared with others, or even experimented with?
Thinking back to her sign-up experience, Sarah suddenly worried about the massive amount of personally identifiable information she already handed over to the company. With a background in IT, she knew what a juicy target hers and other customers’ data would be for a potential hacker. Realistically, how safe was her data from a potential breach? She tried to recall the specifics of the EULA, but the wall of legalese text melted before her memory.
DNA  database  privacy  security  family  data  test  genealogy 
15 days ago by rgl7194
DNA Testing Kits & The Security Risks in Digitized DNA
Direct-to-consumer DNA testing services have experienced a surge in popularity over the past few years.  Digitizing DNA carries the benefits of uncovering ancestry information and can have significant positive impact on science and medical research. It can, for instance, assist in finding a cure for a fatal disease.
According to Peccoud Lab, which specializes in synthetic biology informatics at Colorado State University, Cyberbiosecurity is a specialty that deals with understanding and mitigating new biological security risks emerging at the interface between biosecurity and cybersecurity. The digitization of DNA involves its storage in a database. The solving of a criminal cold case through matching a consumer DNA database with a police database is another example of how digitized DNA can be used.
DNA  database  privacy  security  family  data  test  genealogy 
15 days ago by rgl7194
Genome Hackers Show No One’s DNA Is Anonymous Anymore | WIRED
IN 2013, A young computational biologist named Yaniv Erlich shocked the research world by showing it was possible to unmask the identities of people listed in anonymous genetic databases using only an Internet connection. Policymakers responded by restricting access to pools of anonymized biomedical genetic data. An NIH official said at the time, “The chances of this happening for most people are small, but they’re not zero.”
Fast-forward five years and the amount of DNA information housed in digital data stores has exploded, with no signs of slowing down. Consumer companies like 23andMe and Ancestry have so far created genetic profiles for more than 12 million people, according to recent industry estimates. Customers who download their own information can then choose to add it to public genealogy websites like GEDmatch, which gained national notoriety earlier this year for its role in leading police to a suspect in the Golden State Killer case.
DNA  database  privacy  security  family  hack  genealogy 
15 days ago by rgl7194
How DNA Databases Violate Everyone's Privacy - Schneier on Security
If you're an American of European descent, there's a 60% chance you can be uniquely identified by public information in DNA databases. This is not information that you have made public; this is information your relatives have made public.
Research paper:
"Identity inference of genomic data using long-range familial searches."
Abstract: Consumer genomics databases have reached the scale of millions of individuals. Recently, law enforcement authorities have exploited some of these databases to identify suspects via distant familial relatives. Using genomic data of 1.28 million individuals tested with consumer genomics, we investigated the power of this technique. We project that about 60% of the searches for individuals of European-descent will result in a third cousin or closer match, which can allow their identification using demographic identifiers. Moreover, the technique could implicate nearly any US-individual of European-descent in the near future. We demonstrate that the technique can also identify research participants of a public sequencing project. Based on these results, we propose a potential mitigation strategy and policy implications to human subject research.
A good news article.
DNA  database  privacy  security  family  genealogy 
15 days ago by rgl7194

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