Collection of family health histories: The link between genealogy and public health

Although a number of investigations have been conducted on the information behavior of family historians, we know little about the degree to which they systematically collect information on the causes of death and major illnesses of ancestors. Such information, if reliable and accessible, could be useful to family physicians, the families themselves, and to epidemiologists. This article presents findings from a two‐stage study of amateur genealogists in the USA. An initial state‐wide telephone survey of 901 households was followed by in‐depth interviews with a national sample of 23 family historians. Over half of the responding households in the general survey reported that someone in their family collects ancestral medical data; this practice appears to be more common among respondents who are women, older persons, and those with higher incomes. In‐depth interviews revealed that this information is commonly collected by family historians, and typically comes from death certificates, secondarily from obituaries, and thirdly from word‐of‐mouth or family records; most of these respondents collected health information for reasons of surveillance of their own health risks. Social‐networking approaches to encourage gathering of family data could aid in increased awareness and surveillance of health risks. Implications for health information seeking and applicable theories are discussed.