On Sharing Intentions, and Personal and Interdependent Privacy Considerations for Genetic Data: A Vignette Study

IEEE/ACM Trans Comput Biol Bioinform. Jul-Aug 2019;16(4):1349-1361. doi: 10.1109/TCBB.2018.2854785. Epub 2018 Jul 10.


Genetics and genetic data have been the subject of recent scholarly work, with significant attention paid towards understanding consent practices for the acquisition and usage of genetic data as well as genetic data security. Attitudes and perceptions concerning the trustworthiness of governmental institutions receiving test-taker data have been explored, with varied findings, but no robust models or deterministic relationships have been established that account for these differences. These results also do not explore in detail the perceptions regarding other types of organizations (e.g., private corporations). Further, considerations of privacy interdependence arising from blood relative relationships have been absent from the conversation regarding the sharing of genetic data. This paper reports the results from a factorial vignette survey study in which we investigate how variables of ethnicity, age, genetic markers, and association of data with the individual's name affect the likelihood of sharing data with different types of organizations. We also investigate elements of personal and interdependent privacy concerns. We document the significant role these factors have in the decision to share or not share genetic data. We support our findings with a series of regression analyses.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Access to Information
  • Adolescent
  • Adult
  • Aged
  • Computer Security*
  • Confidentiality*
  • Decision Making
  • Electronic Health Records / statistics & numerical data*
  • Female
  • Genetic Testing
  • Genome, Human
  • Humans
  • Information Dissemination*
  • Intention
  • Internet
  • Male
  • Medical Informatics / methods*
  • Middle Aged
  • Patient Participation
  • Regression Analysis
  • Sex Factors
  • Surveys and Questionnaires
  • Young Adult