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Protecting Research Participants' and Patients' Rights in Scientific Publication 

Ethical and Legal Considerations

Annette Flanagin

Protecting Research Participants' and Patients' Rights in Scientific Publication

  • The right of the research subject to safeguard his or
  • her integrity must always be respected. Every
  • precaution should be taken to respect the privacy of
  • the subject and to minimize the impact of the study
  • on the subject’s physical and mental integrity and
  • on the personality of the subject.
  •    World Medical Association1

Contemporary rules for protecting the rights of individuals (namely, research participants and patients) in scientific publication have their foundations in doctrines developed during the mid-20th century: the Nuremberg Code,2 the World Medical Association’s Declaration of Geneva,3 and the World Medical Association’s Declaration of Helsinki,1 as well as the 1979 US Belmont Report.4 Today, protection of such rights is governed by national and international guidelines and requirements.5-13 Biomedical editors and authors have a specific ethical duty to follow the principles outlined in these doctrines (namely, autonomy, beneficence, and justice)4,11 as well as to honor individuals' rights to privacy when making decisions about publishing studies that involve human experimentation and articles about patients who might be identifiable.14-16 In addition, privacy doctrines and laws in many countries protect an individual’s right to privacy.7-9,11 A legal claim for invasion of privacy (eg, publishing identifying details about or a photograph of an individual without his or her permission) could be brought against a journal for publishing otherwise truthful statements about an individual.17 Privacy law differs from defamation law in that truth may not be used as a defense for invasion of privacy (see 5.9, Defamation, Libel).

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