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Ethical aspects of research into Alzheimer disease. A European Delphi Study focused on genetic and non-genetic research
  1. A van der Vorm1,
  2. M J F J Vernooij-Dassen2,
  3. P G Kehoe3,
  4. M G M Olde Rikkert4,
  5. E van Leeuwen1,
  6. W J M Dekkers1
  1. 1
    IQ Healthcare, Section of Ethics, Philosophy and History of Medicine, Radboud University Nijmegen Medical Centre, The Netherlands
  2. 2
    IQ Healthcare/Alzheimer Centre Nijmegen, Radboud University Nijmegen Medical Centre/Kalorama foundation, The Netherlands
  3. 3
    Institute of Clinical Neurosciences, Dept of Clinical Science at North Bristol, University of Bristol, UK
  4. 4
    Dept of Geriatrics/Alzheimer Centre Nijmegen, Radboud University Nijmegen Medical Centre, The Netherlands
  1. Mr A van der Vorm, Radboud University Nijmegen Medical Centre, IQ Healthcare, Section of Ethics, Philosophy and History of Medicine, 114 IQ Healthcare, PO Box 9101, 6500 HB Nijmegen, The Netherlands; a.vandervorm{at}iq.umcn.nl

Abstract

Background: Although genetic research into Alzheimer disease (AD) is increasing, the ethical aspects of this kind of research and the differences between ethical issues related to genetic and non-genetic research into AD have not yet received much attention.

Objectives: (1) To identify and compare the five ethical issues considered most important by surveyed expert panellists in non-genetic and genetic AD research and (2) to compare our empirical findings with ethical issues in genetic research in general as described in the literature.

Method: A modified Delphi study in two rounds

Results: Genetic and non-genetic research into AD generated an approximately equal number of topics with a considerable overlap. Different priorities in the ethics of both types of research were found. Genetic research raised new topics such as “confidentiality of genetic information” and “implications of research for relatives” which changes the impact and application of existing ethical topics such as “informed consent” and is judged to have more impact on both individuals and society. A difference with the results of more theoretical approaches on ethical aspects related to AD research was also found.

Conclusions: Different priorities are given to ethical issues in genetic and non-genetic research. These arise partly because genetic research causes unique and new questions, mostly related to the position of family members and the status of and access to genetic information. Differences found between the results of our empirical study and the more theoretical literature, suggest an additional value for empirical research in medical ethics.

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Footnotes

  • ▸ Appendices are published online only at http://jme.bmj.com/content/vol35/issue2

  • Funding: The work for this publication was carried out within the framework of the programme “The Societal Component of Genomics Research”, which is supported by the Netherlands Organization for Scientific Research (NWO). The funding organisation was not involved in any stage of this research.

  • Competing interests: None.

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