Chapter Seven: THE ETHICAL REVIEW OF RESEARCH INTO RARE GENETIC DISORDERS.

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    • Subject Terms:
      ETHICS in Biomedical Research: International Perspectives (Book)
    • Subject Terms:
      PARKER, Michael; ASHCROFT, Richard; WILKIE, Andrew; KENT, Alastair
    • Abstract:
      Chapter 7 of the book "Ethics in Biomedical Research: International Perspectives," is presented. It explores the ethical issues on studies regarding rare genetic disorders and the problem of categorizing them as research or clinical investigations. As research, gaining fund and getting published is much easier, but in the absence of a well-defined distinction between research and clinical investigation, the author contends that these activities be classified as the latter, unless researchers begin to search for individuals outside the patient's family.