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‘Ethical responsibility’ or ‘a whole can of worms’: differences in opinion on incidental finding review and disclosure in neuroimaging research from focus group discussions with participants, parents, IRB members, investigators, physicians and community members
  1. Caitlin Cole1,
  2. Linda E Petree1,
  3. John P Phillips1,2,
  4. Jody M Shoemaker1,
  5. Mark Holdsworth3,
  6. Deborah L Helitzer4
    1. 1The Mind Research Network, Albuquerque, New Mexico, USA
    2. 2Department of Neurology, The University of New Mexico, Albuquerque, New Mexico, USA
    3. 3College of Pharmacy, The University of New Mexico, Albuquerque, New Mexico, USA
    4. 4Department of Family and Community Medicine, The University of New Mexico Health Sciences Center, Albuquerque, New Mexico, USA
    1. Correspondence to Caitlin Cole, The Mind Research Network, 1101 Yale Blvd NE, Albuquerque, NM 87106, USA; ccole{at}mrn.org

    Abstract

    Purpose To identify the specific needs, preferences and expectations of the stakeholders impacted by returning neuroimaging incidental findings to research participants.

    Methods Six key stakeholder groups were identified to participate in focus group discussions at our active neuroimaging research facility: Participants, Parents of child participants, Investigators, Institutional Review Board (IRB) Members, Physicians and Community Members. A total of 151 subjects attended these discussions. Transcripts were analysed using principles of Grounded Theory and group consensus coding.

    Results A series of similar and divergent themes were identified across our subject groups. Similarities included beliefs that it is ethical for researchers to disclose incidental findings as it grants certain health and emotional benefits to participants. All stakeholders also recognised the potential psychological and financial risks to disclosure. Divergent perspectives elucidated consistent differences between our ‘Participant’ subjects (Participants, Parents, Community Members) and our ‘Professional’ subjects (IRB Members, Investigators and Physicians). Key differences included (1) what results should be reported, (2) participants’ autonomous right to research information and (3) the perception of the risk–benefit ratio in managing results.

    Conclusions Understanding the perceived impact on all stakeholders involved in the process of disclosing incidental findings is necessary to determine appropriate research management policy. Our data further demonstrate the challenge of this task as different stakeholders evaluate the balance between risk and benefit related to their unique positions in this process. These findings offer some of the first qualitative insight into the expectations of the diverse stakeholders affected by incidental finding disclosure.

    • Research Ethics
    • Neuroimaging
    • Autonomy

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