Perspectives on human microbiome research ethics

Amy L. McGuire, Laura S. Achenbaum, Simon N. Whitney, Melody J. Slashinski, James Versalovic, Wendy A. Keitel, Sheryl A. McCurdy

Research output: Contribution to journalArticle

22 Scopus citations

Abstract

Study of ethical, legal, and social implications (ELSI) of human microbiome research has been integral to the Human Microbiome Project (HMP). This study explores core ELSI issues that arose during the first phase of the HMP from the perspective of individuals involved in the research. We conducted semi-structured in-depth interviews with investigators and NIH employees ("investigators") involved in the HMP, and with individuals recruited to participate in the HMP Healthy Cohort Study at Baylor College of Medicine ("recruits"). We report findings related to three major ELSI issues: informed consent, data sharing, and return of results. Our findings demonstrate that investigators and recruits were similarly sensitive to these issues yet generally comfortable with study design in light of current knowledge about the microbiome.

Original languageEnglish (US)
Pages (from-to)1-14
Number of pages14
JournalJournal of Empirical Research on Human Research Ethics
Volume7
Issue number3
DOIs
StatePublished - Jul 2012

Keywords

  • Data sharing
  • Ethics
  • Human microbiome
  • Informed consent
  • Policy
  • Qualitative research
  • Research
  • Return of results

ASJC Scopus subject areas

  • Education
  • Communication
  • Social Psychology
  • Law

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