Download full-text


Available from: Joan Fujimura, Aug 03, 2015

  • No preview · Article · Mar 2011 · Science as Culture
  • [Show abstract] [Hide abstract]
    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.
    No preview · Article · Jun 2011 · Human Genetics
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: Discussions about direct-to-consumer (DTC) DNA ancestry tests have to date been based primarily on conjectures, speculation, and anecdotes, despite the industry being more than a decade old. Representative, empirical data on consumer characteristics; motivations and expectations for testing; intended uses for the information; understanding of results; and behavioral and psychological reactions to the tests are absent. Although the 2010 American Society of Human Genetics white paper clarifies the number and some general characteristics of companies marketing and selling DNA ancestry tests, additional data about the industry's practices have been unavailable. To promote a data-driven discussion of the DNA ancestry testing industry, we conducted a systematic investigation to identify companies selling DNA ancestry tests and conducted an empirical study of the industry's practices using data collected from each company's website. Here, we present a wealth of data, including an updated directory of companies, marketing slogans, product types and names, range of prices, diversity of reporting and representing results, noted benefits and limitations of testing, and a host of website practices. The tremendous diversity of tests, information, and practices of companies in the DNA ancestry sector should be considered when policies for best practice guidelines or regulatory oversight are being developed.
    Preview · Article · Mar 2012 · Genetics in medicine: official journal of the American College of Medical Genetics
Show more