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Experiment on identical siblings separated at birth: ethical implications for researchers, universities, and archives today
  1. Robert L. Klitzman1,
  2. Adam M. Kelmenson2
  1. 1Professor of Psychiatry; Director, Masters of Bioethics Program, Columbia University, New York, New York, USA
  2. 2Faculty of Medicine, Chinese University of Hong Kong, Hong Kong SAR, Hong Kong
  1. Correspondence to Dr Robert L. Klitzman, Professor of Psychiatry; Director, Masters of Bioethics Program, Columbia University, New York, NY 10027-6902, USA; rlk2{at}columbia.edu

Abstract

Several films, including Three Identical Strangers, examined ethical problems in an experiment that involved identical siblings who were adopted as infants and separated into different families to examine the effects of nature versus nurture. The study was primarily designed and directed by Dr Peter Neubauer. The experiment, conducted in the 1960’s through 1980’s, serves as an important cautionary case study, raising several critical and ongoing ethical issues faced by researchers, universities and archives today. The organisation coordinating the study donated the research records to Yale University under the condition that they remain sealed until 2065, and has impeded study participants’ full access to research material. This case raises questions of what investigators, their descendants, research ethics committees or institutional review boards (IRBs), universities and archives should do with study records when researchers retire or die—whether universities should accept researchers’ donations of archival records that may contain patient or participant data, and if so, under what conditions. This study also poses crucial issues for IRBs—for example, whether researchers themselves or their designates should control all access to study records, particularly if controversy or lawsuits ensue. These questions will become increasingly crucial since the amount of research has burgeoned over recent decades, and investigators, on retirement or death, may want to donate their archives to universities. This experiment thus highlights ethical questions to which researchers, IRBs, universities, healthcare institutions, archivists and libraries should attend.

  • research ethics
  • policy guidelines/inst review boards/review cttes
  • autonomy
  • informed consent
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Footnotes

  • Twitter @RobertKlitzman

  • Contributors The authors are solely responsible for conception of the research, the acquisition, analysis and/or interpretation of data and the drafting, revising and final version of this manuscript.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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