Center for the Integration of Genetic Healthcare Technologies, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
Genet Med. 2012 Jun;14(6):586-93. doi: 10.1038/gim.2011.77. Epub 2012 Mar 1.
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.
尽管直接面向消费者(DTC)的 DNA 血统测试行业已经存在了十多年,但迄今为止,关于该行业的讨论主要还是基于猜测、推测和传闻。缺乏关于消费者特征的代表性、经验数据;测试的动机和期望;对信息的预期用途;对结果的理解;以及对测试的行为和心理反应。尽管 2010 年美国人类遗传学协会的白皮书澄清了营销和销售 DNA 血统测试的公司的数量和一些一般特征,但关于该行业实践的数据一直无法获得。
为了促进对 DNA 血统测试行业的基于数据的讨论,我们进行了一项系统调查,以确定销售 DNA 血统测试的公司,并使用从每家公司网站收集的数据对该行业的实践进行了实证研究。
在这里,我们提供了大量的数据,包括公司的更新目录、营销口号、产品类型和名称、价格范围、结果的多样性报告和表示、测试的注意益处和局限性,以及许多网站实践。
在制定最佳实践指南或监管监督政策时,应考虑 DNA 血统领域的公司的测试、信息和实践的巨大多样性。