Although hobbies are highly popular among adults around the world, little research has been done on the information behavior of hobbyists. In particular, very little empirical research has been published regarding genealogy as a hobby. I am conducting extended interviews with a sample of family historians in the U.S., asking a series of questions about their specific practices, information needs and motivations for doing family histories. Beside more general questions, I am asking questions regarding the collection of information about relatives’ diseases and causes of death, because this topic connects to earlier work of mine and to important research questions about the uptake, utility, understanding and ethics surrounding genetic testing.

Background

Investigations of “hobbies” like genealogy fall into a more general category called "serious leisure" (Hartel, 2003; Stebbins, 2001). According to Stebbins (p. 3), varieties of serious leisure include amateurism (for example, playing on a city softball team), volunteering (e.g., as a docent in a museum), and hobbies (genealogy or coin collecting, for example). Gelber (1999, p. 31) notes that the goal-orientation, skill and experience required by hobbies make them similar to paid work; he estimates that between ten and fifteen percent of adults practice some kind of hobby. It is unclear how many people practice genealogy as a hobby. Webster’s dictionary defines “genealogy” as accounts of the descent of a person, family, or group from an ancestor or from older forms. Relatively little empirical research has been published regarding genealogy as a hobby. There have been two relevant (but unpublished) doctoral dissertations (Dulong, 1986, and Veale, 2004), an empirical study by Elizabeth Yakel (2003) and several papers by Ontario sociologist, Ronald Lambert (1995a, 1995b, 1996).

The limited amount of information behavior research on hobbies in general, and on genealogy in particular, coupled with a need to know more about how people view genetic influences on their health, leads to my current investigation involving in-depth interviews with a sample of family historians. None of the existing studies investigated (in any depth) an important topic: what information do family historians typically collect regarding the diseases and causes of death of their ancestors and family members?
This question is particularly important as genetic testing and counseling become more common in the provision of health care. Eerola and Blomqvist, et al. (2001), Harlow and Fernandez (2005), Hunt and Gwinn, et al. (2003) and
Yoon and Scheuner, et al. (2002, 2003) believe that family medical histories are potentially very useful in surveillance of cancer and heart disease among family members. The study’s research questions include the following:

• Who are family historians (in terms of age, gender and other background factors)?
• How and why did they start collecting family information? What motivates them?
• What sources do they commonly use, and why?
• What information do they collect about death and disease among family members?
• For what purpose do they collect health-related information? How do they see the utility of it?
• Do they perceive that certain diseases “run in their family”?
•How knowledgeable are they about genetics? About genetic testing?
• Have any family members had genetic tests, that they know of?
• Would they be willing to be tested themselves?

The initial stage was a telephone survey of 901 households, conducted by the UK Survey Research Center, sought to determine how widespread is the collection of information about death and disease among family members. 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 the second stage a snowball sample of 23 family historians from eight U.S. states was recruited through local genealogical societies and family name projects and interviewed during 2007. I found that health-related 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

References

Case, D., Johnson, J.D., Andrews, J.E., Allard, S.L. & Kelly, K.M. (2004). From Two-Step Flow to the Internet: The Changing Array of Sources for Genetics Information Seeking. Journal of the American Society for Information Science & Technology, 55 (8), 660-669.

Dulong, J. P. (1986). Genealogical groups in a changing organizational environment: From lineage to heritage. Unpublished doctoral dissertation. Sociology Dept., Wayne State University.

Eerola, H., C. Blomqvist, et al. (2001). Familial breast cancer in southern Finland - how prevalent are breast cancer families and can we trust the family history reported by patients? European Journal of Cancer 36(9): 1143-1148.

Gelber, S. M. (1999). Hobbies: leisure and the culture of work in America. New York: Colombia University Press.

Harlow, I. & Fernandez, C. (2005). The oral tradition meets the genetic family history: Anthropologists, folklorists, genetic health specialists, and consumers unite. The Genetic Family History in Practice 2(3), 4.

Hartel, J. (2003). The serious leisure frontier in library and information studies: Hobby domains. Domain Analysis [Special issue]. Knowledge Organization 3(4). 228-238.

Hunt, S. C., Gwinn, M. et al. (2003). Family history assessment: Strategies for prevention of cardiovascular disease. American Journal of Preventative Medicine 24, 136-142.

Yoon, P.W., Scheuner, M.T., Peterson-Oehlke, K.L., Gwinn, M., Faucett, A., Khoury, M.J. (2004). Can family history be used as a tool for public health and preventitive medicine? Genetic Medicine. 4 304-10.

Yoon, P.W., Scheuner, M.T., Khoury, M.J. (2003) Research priorities for evaluating family history in the prevention of common chronic diseases. American Journal of Preventitive Medicine 24, 128-35