title: Ethical considerations in the study of online illness narratives: a qualitative review.
abstract: OBJECTIVE
  This aim of the review was to describe differences in ethical approaches to research on Internet communication during illness and to report conclusions drawn relevant to a proposed narrative analysis of parent blogs of childhood illness.
  
  
  BACKGROUND
  As the study of the online expression of illness experiences becomes more expansive, discussion of related ethical issues is central to promoting research trustworthiness and rigour. Ethical considerations are central to the patient-provider relationship.
  
  
  METHODS
  The EBSCO Host, CINAHL, Medline, Communication & Mass Media Complete, and Google Scholar databases were searched from January 1990 to September 2009 using the terms 'Internet research and ethics', 'Internet research, illness and ethics' and 'blog, Internet research and ethics'. Of the 4114 references found, 21 met the inclusion criteria for the review.
  
  
  METHODS
  The review was designed to be a comprehensive assessment of the concepts analysed and the qualitative research measures taken concerning ethics in Internet research across formats.
  
  
  RESULTS
  Three main approaches to ethical conduct in Internet research on illness experiences were found: human subjects, representation and open source approaches.
  
  
  CONCLUSIONS
  The personal and sensitive nature of online illness narratives demand their consideration in health care as 'human subjects' research. The best hope for ethical treatment of author-participants is the creation of a comprehensive plan for addressing any and all potential ethical conflicts that may arise in the collection, analysis and reporting of data, taking into consideration rapid changes in technology.
authors.affiliation: School of Nursing and Allied Health Professions Holy Family University, Philadelphia, Pennsylvania, USA. cheilferty@holyfamily.edu
authors.forename: Catherine McGeehin
authors.initials: CM
authors.lastname: Heilferty
mesh_terms: D057218:Blogging / Q000941:ethics*; D002648:Child; D003142:Communication; D003657:Decision Making / Q000941:ethics; D032984:Ethics, Research; D005260:Female; D006801:Humans; D007258:Informed Consent / Q000941:ethics; D020407:Internet / Q000941:ethics*; D033262:Narration; D015404:Nursing Methodology Research; D010290:Parents; D018907:Privacy; D036301:Qualitative Research; D012107:Research Design; D035842:Research Subjects; D035844:Researcher-Subject Relations / Q000941:ethics