Tag: gedmatch

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Online Terms of Use for Genealogy Websites – What’s in the Fine Print?

Jorge Contreras Leave a comment

By Jorge L. Contreras

Since genealogy websites first went online, researchers have been using the data that they contain in large-scale epidemiological and population health studies. In many cases, data is collected using automated tools and analyzed using sophisticated algorithms.

These techniques have supported a growing number of discoveries and scientific papers. For example, researchers have used this data to identify genetic markers for Alzheimer’s Disease, to trace an inherited cancer syndrome back to a single German couple born in the 1700s, and to gain a better understanding of longevity and family dispersion.  In the last of these studies, researchers analyzed family trees from 86 million individual genealogy website profiles.

Despite the scientific value of publicly-available genealogy website information, and its free accessibility via the Internet, it is not always the case that this data can be used for research without the permission of the site operator or the individual data subjects.

In fact, the online terms of use (TOU) for genealogy websites may restrict or prohibit the types of uses for data found on those sites.

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Illustration of a man and a woman standing in front of a DNA helix

The End of Privacy?

The Petrie-Flom Center Staff Leave a comment

By Rachele Hendricks-Sturrup

“Any idea we had about privacy is over,” says Dr. Julia Creet, leading international scholar in Cultural Memory Studies, Professor of English at York University, and author of the upcoming book, The Genealogical Sublime. In 2017, Dr. Creet received a York Research Leader Award in part for her investigative work and documentary entitled, “Data Mining the Deceased: Ancestry and the Business of Family,” which received critical acclaim and is streaming on demand in the U.S., Canada, and abroad. Dr. Creet also received a York President’s Research Impact Award in 2019 for her research on digital privacy, data mining, genealogy, and memory.

Dr. Creet’s work builds on Bill of Health’s key ethical and legal discussions around the direct-to-consumer (DTC) genetic testing and health data privacy. Dr. Rachele Hendricks-Sturrup, genetics and privacy scholar and research fellow at Harvard Pilgrim Health Care Institute and health policy counsel at the Future of Privacy Forum, recently sat down with Dr. Creet to discuss emerging issues and concerns about genetic privacy (or a perceived lack thereof) in an increasing information and genealogical age. The following interview has been edited for length and clarity.

 

Dr. Rachele Hendricks-Sturrup: Regarding genealogical recording in the era on increasing DTC genetic testing, you’ve mentioned in your upcoming book, “Any idea we had about privacy is over.” Tell us a little more about your thoughts here. Read More