Abstract
The DNA ancestry testing industry is more than a decade old, yet details about it remain a mystery: there remain no reliable, empirical data on the number, motivations, and attitudes of customers to date, the number of products available and their characteristics, or the industry customs and standard practices that have emerged in the absence of specific governmental regulations. Here, we provide preliminary data collected in 2009 through indirect and direct participant observation, namely blog post analysis, generalized survey analysis, and targeted survey analysis. The attitudes include the first available data on attitudes of those of individuals who have and have not had their own DNA ancestry tested as well as individuals who are members of DNA ancestry-related social networking groups. In a new and fluid landscape, the results highlight the need for empirical data to guide policy discussions and should be interpreted collectively as an invitation for additional investigation of (1) the opinions of individuals purchasing these tests, individuals obtaining these tests through research participation, and individuals not obtaining these tests; (2) the psychosocial and behavioral reactions of individuals obtaining their DNA ancestry information with attention given both to expectations prior to testing and the sociotechnical architecture of the test used; and (3) the applications of DNA ancestry information in varying contexts.
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Notes
An update to the table of companies selling DNA ancestry tests provided in Royal et al. (2010) is forthcoming (Wagner et al. in review). As of April 20, 2011, there were 35 companies identified as actively selling DTC DNA ancestry tests.
Research of attitudes about an emerging (or even ephemeral) industry is by its very nature exploratory. Application of formal statistics to data from surveys on the attitudes and opinions people have of this industry would be premature and misleading, as it would give the impression that opinions are established, stable, and known with greater certainty than is possible with the convenient samples available at this juncture. Nevertheless, this preliminary research is useful in informing future analyses and discussions.
Emic is a standard term in ethnology that refers to attitudes expressed by the research participants while etic refers to their actual actions as observed by the researcher.
The passion chamber has been described as passage of information because you like it, want to share it (not ulterior motive of fame or fortune) and echo chamber as merely talking to each other, not persuading anyone (words that “spread” v. words that “bounce back at you”). The off-cited example of the echo effect is the Howard Dean 2004 campaign. Additionally, search results based on relevance may be personalized by the search engine based on previous behavior of the user, regardless of whether the user is logged-in or not (See http://www.google.com/support/accounts/bin/answer.py?answer=54041).
Surveying “public” opinions requires a careful consideration of what constitutes “public” as there are multiple “publics.” See, e.g. Condit 2001.
The non-participation rate is difficult to calculate since there is no way of knowing whether members logged into their Facebook accounts and viewed the group’s Facebook wall while the invitation to participate was posted, Calculating the non-participation rate via dividing total members of the groups by the total number that responded would, it is speculated, significantly over-estimate the non-participation rate. Future research might increase participation and facilitate a calculable non-participation rate if personal messages were used for recruitment rather than general posts on the Facebook walls.
The terms consumer and customer have distinct legal meanings. Consumer is a narrower term than customer. Consumers are those who are not only purchasers but also end-users, as opposed to customer which would include individuals who are not end-users (e.g. individuals or entities who purchase the tests for third-parties).
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Acknowledgments
The research reported here was conducted as part of Dr. Wagner’s dissertation research at Penn State University, and she owes considerable gratitude to her committee which included Dr. Kenneth Weiss (chair), Dr. Mark Shriver, Dr. Nina Jablonski, Dr. Chloe Silverman, and Prof. Jonathan Marks. Additional thanks goes to Dr. Anne Buchanan and Mr. Blake Harper for providing generous feedback and support during this research endeavor. Finally, Dr. Wagner acknowledges and thanks Dr. Charmaine Royal for post-doctoral support. Dr. Kurt Johnson, Director of the Survey Research Center (The Pennsylvania State University), provided generous feedback with survey design, including suggestions on question design, including the word choices to minimize excessive scientific jargon or legalese; the format of both the question and the response options to keep participants alert and responsive; the length of questions and length of the overall survey; the order of the questions; cost and benefit analysis of incorporating open-ended questions; the inclusion of response options to distinguish instances of mere non-response from intentionally skipped questions; inclusion of skip logic; and the recognized limitations of web-based survey. The literary reference to Kurt Vonnegut’s “granfalloons” arose during a conversation on May 5, 2010 between Dr. Wagner and Dr. Jon Merz (University of Pennsylvania, Center for Bioethics). Dr. Merz deserves acknowledgment for that welcomed contribution.
Conflicts of interest
The authors declare they have no conflicts of interest.
Ethical standards
The authors declare this research was conducted in compliance with applicable laws and with approval from the Pennsylvania State University Office of Research Protections as exempt social science research (IRB #31084 “Attitudes on DNA Ancestry Tests”).
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Wagner, J.K., Weiss, K.M. Attitudes on DNA ancestry tests. Hum Genet 131, 41–56 (2012). https://doi.org/10.1007/s00439-011-1034-5
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DOI: https://doi.org/10.1007/s00439-011-1034-5