, Volume 12, Issue 4, pp 471–493 | Cite as

Parent perspectives on brain scans and genetic tests for OCD: Talking of difficult presents, desired pasts, and imagined futures

  • Louise WhiteleyEmail author
  • Emily Borgelt
  • S. Evelyn Stewart
  • Judy Illes
Original Article


This paper investigates parent perspectives on potential future applications of neuroimaging and genetic research in the OCD clinical setting. Grounded in qualitative interviews with parents whose children had participated in an OCD neuroimaging and genetic research study in the United States, we situate parent discussions of imagined futures in their projections from difficult presents and into desired pasts. Parents reported apparently high receptivity to potential future neuroimaging and genetic tests. Yet when they responded, ‘yes, anything that helps’, uncertainty, caution, and resistance were expressed in implicit negotiations over what it means to ‘help’. We situate the discussion of future technologies in the wider context of how a biological approach figures in parents’ understandings of OCD. A biological perspective was prioritised when it facilitated a journey towards understanding-as-acting; the intense gathering of knowledge judged likely to lead to better outcomes. When biological knowledge did not seem likely to lead to or itself constitute action, parents were often reluctant to even discuss it. The perspectives of those who may encounter future technologies are relevant to shaping their development, but gathering and interpreting such perspectives presents methodological, conceptual, and normative difficulties. These difficulties with time-travelling talk are discussed throughout the paper.


OCD biomarkers neuroethics clinical translation neuroimaging brain talk and gene talk 



We would like to thank the study participants who shared their experiences and perspectives with us. Research expenses and salaries of EM and EB, and LW during data collection, were supported by the National Institutes of Health/National Institute of Mental Health (R01#MH084282 [JI]). Analysis and writing up was completed whilst LW was employed at Medical Museion and the Novo Nordisk Foundation Center for Basic Metabolic Research (CBMR), University of Copenhagen, Denmark. The neuroimaging and genetics study that parents and their children had previously participated in was funded by the Judah OCD Foundation. Thanks to Dan Buchman for discussions that supported the development of the interview framework, and to Cristina Geronda who acted as research assistant for the project and provided invaluable practical support and early discussions.

Conflict of interest

The manuscript comprises original material that is not under review elsewhere, and the study on which the research is based has been subject to ethics review at the University of British Columbia. None of the authors have intellectual or financial conflicts of interest.


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Copyright information

© Macmillan Publishers Ltd 2017

Authors and Affiliations

  1. 1.Medical Museion and Novo Nordisk Foundation Center for Basic Metabolic ResearchUniversity of CopenhagenCopenhagen KDenmark
  2. 2.National Core for NeuroethicsUniversity of British ColumbiaVancouverCanada
  3. 3.Stanford Center for Biomedical EthicsStanford UniversityStanfordUSA
  4. 4.Pediatric OCD Clinic and Translational Research ProgramUniversity of British ColumbiaVancouverCanada

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