title: '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.
abstract: OBJECTIVE
  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.
authors.affiliation: The Mind Research Network, Albuquerque, New Mexico, USA.
authors.forename: Caitlin
authors.initials: C
authors.lastname: Cole
authors.affiliation: The Mind Research Network, Albuquerque, New Mexico, USA.
authors.forename: Linda E
authors.initials: LE
authors.lastname: Petree
authors.affiliation: The Mind Research Network, Albuquerque, New Mexico, USA Department of Neurology, The University of New Mexico, Albuquerque, New Mexico, USA.
authors.forename: John P
authors.initials: JP
authors.lastname: Phillips
authors.affiliation: The Mind Research Network, Albuquerque, New Mexico, USA.
authors.forename: Jody M
authors.initials: JM
authors.lastname: Shoemaker
authors.affiliation: College of Pharmacy, The University of New Mexico, Albuquerque, New Mexico, USA.
authors.forename: Mark
authors.initials: M
authors.lastname: Holdsworth
authors.affiliation: Department of Family and Community Medicine, The University of New Mexico Health Sciences Center, Albuquerque, New Mexico, USA.
authors.forename: Deborah L
authors.initials: DL
authors.lastname: Helitzer
mesh_terms: D000328:Adult; D030881:Disclosure / Q000941:ethics*; D028744:Ethics Committees, Research; D032984:Ethics, Research; D005260:Female; D017144:Focus Groups; D006801:Humans; D033162:Incidental Findings; D008297:Male; D008875:Middle Aged; D028681:Moral Obligations; D059906:Neuroimaging; D010290:Parents; D010820:Physicians; D012108:Research Personnel; D012111:Residence Characteristics; D012941:Social Responsibility
keywords: Autonomy; Neuroimaging; Research Ethics