Legal terms of use and public genealogy websites

Abstract

Public genealogy websites, to which individuals upload family history, genealogy, and sometimes individual genetic data, have been used in an increasing number of public health, epidemiological, and genetic studies. Yet there is little awareness among researchers of the legal rules that govern the use of these online resources. We analyzed the online Terms of Use (TOU) applicable to 17 popular genealogy websites and found that none of them expressly permit scientific research, while at least 13 contain restrictions that may limit or prohibit scientific research using data obtained from those sites. In order to ensure that researchers who use genealogy and other data from these sites for public health and other scientific research purposes do not inadvertently breach applicable TOUs, we recommend that genealogy website operators consider revising their TOUs to permit this activity.

Credit for and Control of Research Outputs in Genomic Citizen Science

“…Such mechanisms include terms of use or similar contractual devices that must be accepted before gaining access to data sets or other outputs. For example, one recent study found that most publicly accessible genealogy websites have adopted terms of use that restrict the ability of third parties to use data published on those sites, including family trees and genetic information (28). More sophisticated genomic data sets are also often subject to agreements that limit their use in a range of contexts, including commercial research, or that grant access only after review and approval by a data access committee (26,101).…”