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.
