Direct-to-Consumer genetic testing: Contextual privacy predicament

Hsiao Ying Huang, Masooda Bashir

Research output: Contribution to journalArticlepeer-review


In this study, we investigated the flow of information and potential privacy infringements in Direct-to-Consumer (DTC) genetic testing services available online. We adopted Nissenbaum's framework of Contextual Integrity (CI) to examine six DTC companies’ privacy policies, terms of use, and consent processes. Our analyses indicate that the flow of information within certain contexts of DTC services presents alarming privacy vulnerabilities. In this paper, we provide a new perspective that can be used when evaluating privacy vulnerabilities for a given DTC online genetic testing service. The sensitive and unique features of genetic information make privacy even more of an important consideration for this type of information than for other types of medical/health information. In addition, we have limited knowledge about the harmful consequences that can arise from privacy invasions, such as genetic information breaches, genome database hacking, and so forth. Therefore, we believe that further research and in-depth investigations from the information community are desperately needed to address the privacy of genetic information.

Original languageEnglish (US)
Pages (from-to)1-10
Number of pages10
JournalProceedings of the Association for Information Science and Technology
Issue number1
StatePublished - Jan 2015


  • Direct-to-consumer genetic testing
  • Genetic information privacy
  • Information ethics
  • Information flow
  • Information policy

ASJC Scopus subject areas

  • General Computer Science
  • Library and Information Sciences


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