Legal terms of use and public genealogy websites.

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.

Population genealogy resource shows evidence of familial clustering for Alzheimer disease.

Objective: To show the potential of a resource consisting of a genealogy of the US record linked to National Veterans Health Administration (VHA) patient data for investigation of the genetic contribution to health-related phenotypes, we present an analysis of familial clustering of VHA patients diagnosed with Alzheimer disease (AD).

Methods: Patients with AD were identified by the code. The Genealogical Index of Familiality method was used to compare the average relatedness of VHA patients with AD with expected relatedness.

Creation of a national resource with linked genealogy and phenotypic data: the Veterans Genealogy Project.

Purpose: Creation of a genealogy of the United States and its ancestral populations is under way. When complete, this US genealogy will be record linked to the National Veteran's Health Administration medical data representing more than 8 million US veterans.

Methods: Genealogical data are gathered from public sources, primarily the Internet.