, 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 Whiteley
  • 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.


  1. Adam, N. (2004) Memory of futures. Kronoscope 42: 297–315.CrossRefGoogle Scholar
  2. Adame, A. and Knudson, R.M. (2007) Beyond the counter-narrative: Exploring alternative narratives of recovery from the psychiatric survivor movement. Narrative Inquiry 17(2): 157–178.CrossRefGoogle Scholar
  3. Amen Clinics (2016) Obsessive Compulsive Spectrum Disorders. Retrieved from
  4. Anderson, J.A. and Illes, J. (2012) Neuroimaging and Mental Health: Drowning in a Sea of Acrimony. AJOB Neuroscience 3(4): 42–43.CrossRefGoogle Scholar
  5. Anderson, J.A., Mizgalewicz, A.K. and Illes, J. (2013) Triangulating perspectives on functional neuroimaging for disorders of mental health. BMC Psychiatry 13: 208.CrossRefGoogle Scholar
  6. Anticevic, A., Hu, S., Zhang, S., Savic, A., Billingslea, E., Wasylink, S., Repovs, G., Cole, M.W., Bednarski, S., Krystal, J.H., Bloch, M.H., Li, C.S. and Pittenger, C. (2014) Global resting-state functional magnetic resonance imaging analysis identifies frontal cortex, striatal, and cerebellar dysconnectivity in obsessive-compulsive disorder. Biological Psychiatry 75(8): 595–605.CrossRefGoogle Scholar
  7. American Psychiatric Association (2007) Practice Guideline for the Treatment of Patients with Obsessive-Compulsive Disorder. Arlington, VA: American Psychiatric Association. Available online at
  8. American Psychiatric Association (2015) What is Obsessive Compulsive Disorder? Arlington, VA: American Psychiatric Association. Available online at
  9. As Good as it Gets 1997, motion picture, Gracie Films, US.Google Scholar
  10. Barr, M., & Rose, D. (2008) The great ambivalence: Factors likely to affect service user and public acceptability of the pharmacogenomics of antidepressant medication. Sociology of Health & Illness, 30(6): 944–958.CrossRefGoogle Scholar
  11. Bedlam 2013, documentary, Channel 4, UK.Google Scholar
  12. Borgelt, E., Buchman, D.Z. and Illes, J. (2010) ‘This is why you’ve been suffering’: Reflections of providers on neuroimaging in mental health care. Bioethical Inquiry 8: 15–25.CrossRefGoogle Scholar
  13. Borgelt, E., Buchman, D.Z., Weiss, M. and Illes, J. (2012) In search of ‘anything that would help’: Parent perspectives on emerging neurotechnologies. Journal of Attention Disorders. Online publication, May 22, 2012; doi: 10.1177/1087054712445781.
  14. Borry, P., Schotsmas, P. and Dierickx, K. (2005) The birth of the empirical turn in bioethics. Bioethics 19(1): 49–71.CrossRefGoogle Scholar
  15. Brem, S., Hauser, T. U., Iannaccone, R., Brandeis, D., Drechsler, R. and Walitza, S. (2012) Neuroimaging of cognitive brain function in paediatric obsessive compulsive disorder: A review of literature and preliminary meta-analysis. Journal of Neural Transmission 119(11): 1425–1448.CrossRefGoogle Scholar
  16. Brimberg, L., Benhar, I., Mascaro-Blanco, A., Alvarez, K., Lotan, D., Winter, C., Klein, J., Moses, A. E., Somnier, F. E., Leckman, J. F., Swedo, S. E. Cunningham, M. W. and Joel, D. (2012) Behavioral, pharmacological, and immunological abnormalities after streptococcal exposure: A novel rat model of Sydenham chorea and related neuropsychiatric disorders. Neuropsychopharmacology 37(9): 2076–2087.CrossRefGoogle Scholar
  17. Britton, J.C., Rauch, S.L., Rosso, I.M., Killgore, W.D., Price, L.M., Ragan, J., Chosak, A., Hezel, D.M., Pine, D.S., Leibenluft, E., Pauls, D.L., Jenike, M.A. and Stewart, S.E. (2010) Cognitive inflexibility and frontal-cortical activation in pediatric obsessive-compulsive disorder. Journal of the American Academy of Child and Adolescent Psychiatry 49(9): 944–953.CrossRefGoogle Scholar
  18. Buchman, D.Z., Borgelt, E., Whiteley, L. and Illes, J. (2013) Neurobiological narratives: experiences of mood disorder through the lens of neuroimaging. Sociology of Health & Illness 35(1): 66–81.CrossRefGoogle Scholar
  19. Callard, F., Rose, D., Hanif, E-L, Quigley, J., Greenwood, K. and Wykes, T. (2012) Holding blame at bay? ‘Gene talk’ in family members’ accounts of schizophrenia aetiology. BioSocieties 7(3): 273–293.CrossRefGoogle Scholar
  20. Chan, S., & Coggon, J. (2013) Beyond the is/ought divide: Studying the nature of the bioethical enterprise. Health Care Analysis : HCA : Journal of Health Philosophy and Policy, 21(1): 1–5. doi:  10.1007/s10728-012-0238.CrossRefGoogle Scholar
  21. Charmaz, K. (2006)Constructing Grounded Theory. London: Sage.Google Scholar
  22. Choudhury, S. and Slaby, J. (2012) Critical Neuroscience: A Handbook of the Social and Cultural Contexts of Neuroscience. Chichester: Wiley-Blackwell.Google Scholar
  23. Choudhury, S., Nagel, S.K. and Slaby, J. (2009) Critical neuroscience: Linking neuroscience and society through critical practice. BioSocieties 4(1): 61–77.CrossRefGoogle Scholar
  24. Cognitive enhancement? Exploring modafinil use in social context. In Pickersgill, M., & Van Keulen, I. (Eds.), Advances in Medical Sociology: Vol 13. Sociological reflections on the neurosciences. Emerald Group Publishing Limited.Google Scholar
  25. Draper, H. and Ives, J. (2007) An empirical approach to bioethics: Social science ‘of’, ‘for’ and ‘in’ bioethics research. Cognition, Brain, Behavior XI(2): 319–330.Google Scholar
  26. Extreme OCD Camp 2013, television program, BBC3, UK.Google Scholar
  27. Fireman, B., Koran, L. M., Leventhal, J. L. and Jacobson, A. (2001) The prevalence of clinically recognized obsessive-compulsive disorder in a large health maintenance organization. American Journal of Psychiatry 158(11): 1904–1910.CrossRefGoogle Scholar
  28. Fox Keller, E. (2000) The Century of the Gene. Harvard, MA: Harvard University Press.Google Scholar
  29. Gillihan, S.J. (2016) Using brain scans to diagnose mental disorders: Unfortunately, the science isn’t there [Blog post on Psychology Today]. Retrieved from
  30. Glaser, B. (1978) Theoretical Sensitivity: Advances in the Methodology of Grounded Theory. Mill Valley, CA: Sociology Press.Google Scholar
  31. Grunwald, A. (2010) From speculative nanoethics to explorative philosophy of nanotechnology. Nanoethics 4: 91–101.CrossRefGoogle Scholar
  32. Hart, B. (2014) Autism parents & neurodiversity: Radical translation, joint embodiment and the prosthetic environment. BioSocieties 9: 284–303.CrossRefGoogle Scholar
  33. Hurst, S. (2010) What ‘empirical turn in bioethics’?. Bioethics 24(8): 439–444.CrossRefGoogle Scholar
  34. Illes, J. and Sahakin, B. (2011) The Oxford Handbook of Neuroethics. Oxford: Oxford University Press.CrossRefGoogle Scholar
  35. Karno, M., Golding, J. M., Sorenson, S. B. and Burnam, M. A. (1988) The epidemiology of obsessive- compulsive disorder in five US communities. Archives of General Psychiatry 45(12): 1094–1099.CrossRefGoogle Scholar
  36. Linden, D.E. and Fallgatter, A. (2009) Neuroimaging in psychiatry: From bench to bedside. Frontiers in Human Neuroscience 3: 49, doi:  10.3389/neur0.09.049.2009.Google Scholar
  37. Malabou, C. (2008) What Should We Do With Our Brain? Translated from French by S. Rand. Perspectives in Continental Philosophy Series. New York: Fordham University Press.Google Scholar
  38. March, J.S. (2011) Looking to the future of research in pediatric anxiety disorders. Depression and Anxiety 28(1): 88–98.CrossRefGoogle Scholar
  39. Marris, C., & Rose, N. (2012) Let’s get real on synthetic biology. New Scientist, 2868. Google Scholar
  40. Mataix-Cols, D., Boman, M., Monzani, B., Rück, C., Serlachius, E., Långström, N. and Lichtenstein, P. (2013) Population-based, multigenerational family clustering study of obsessive-compulsive disorder. JAMA Psychiatry 70(7): 709–717.CrossRefGoogle Scholar
  41. Mol, A. (2003) The Body Multiple. Durham, North Carolina: Duke University Press.Google Scholar
  42. Monk (2002–2009), television program, USA Network, US.Google Scholar
  43. Moretti, G., Pasquini, M., Mandarelli, G., Tarsitani, L. and Biondi, M. (2008) What every psychiatrist should know about PANDAS: a review. Clinical Practice and Epidemiology in Mental Health 21(4): 13, doi:  10.1186/1745-0179-4-13.CrossRefGoogle Scholar
  44. NIMH (2010) Neuroimaging and Mental Illness: A Window Into the Brain [Pamphlet]. Retrieved from
  45. Nordmann, A. (2007) If and then: A critique of speculative NanoEthics. Nanoethics 1: 31–46, doi:  10.1007/s11569-007-0007-6.CrossRefGoogle Scholar
  46. Nordmann, A. and Macnaghten, P. (2010) Engaging narratives and the limits of lay ethics: Introduction. Nanoethics 4: 133–140, doi:  10.1007/s11569-010-0095-6.CrossRefGoogle Scholar
  47. Nordmann, A. and Rip, A. (2009) Mind the gap revisited. Nature Nanotechnology 4: 273–274, doi:  10.1038/nnano.2009.26.CrossRefGoogle Scholar
  48. OCD Foundation (2014) Treatment of OCD, viewed 17 May 2014,
  49. Ortega, F. (2009) The cerebral subject and the challenge of neurodiversity. BioSocieties 4(4): 425–445.CrossRefGoogle Scholar
  50. Pauls, D.L. (2010) The genetics of obsessive-compulsive disorder: A review. Dialogues in Clinical Neuroscience 12(2): 149–163.Google Scholar
  51. Phoebe in Wonderland 2008, motion picture, Red Envelope Entertainment, US.Google Scholar
  52. Pickersgill, M. (2011) Promising therapies: Neuroscience, clinical practice, and the treatment of psychopathy. Sociology of Health & Illness, 33(3), 448–464.CrossRefGoogle Scholar
  53. Pickersgill, M., Cunningham-Burley, S. and Martin, P. (2011) Constituting neurologic subjects: Neuroscience, subjectivity and the mundane significance of the brain. Subjectivity 4(3): 346–365.CrossRefGoogle Scholar
  54. Pitts-Taylor, V. (2010) The plastic brain: Neoliberalism and the neuronal self. Health 14(6): 635–652.CrossRefGoogle Scholar
  55. Rose, N. (2010) ‘Screen and intervene’: Governing risky brains. History of the Human Sciences 23(1): 79–105.CrossRefGoogle Scholar
  56. Rose, N. and Abi-Rached, J.M. (2013) Neuro: The New Brain Sciences and the Management of the Mind. Princeton, NJ: Princeton University Press.CrossRefGoogle Scholar
  57. Ruscio, A.M., Stein, D.J., Chiu, W.T. and Kessler, R.C. (2010) The epidemiology of obsessive- compulsive disorder in the National Comorbidity Survey Replication. Molecular Psychiatry 15(1): 53–63.CrossRefGoogle Scholar
  58. Selin, C. (2008) The sociology of the future: Tracing stories of technology and time. Sociology Compass 2(6): 1878–1895.CrossRefGoogle Scholar
  59. Singh, I. (2005) Will the ‘real boy’ please behave: Dosing dilemmas for parents of boys with ADHD. American Journal of Bioethics 5(39): 34–47.CrossRefGoogle Scholar
  60. Singh, I. (2011) A disorder of anger and aggression: Children’s perspectives on ADHD in the UK. Social Science & Medicine 73(6): 889–96.CrossRefGoogle Scholar
  61. Singh, I. (2012) Not robots’: Children’s perspectives on authenticity, moral agency and stimulant drug treatments. Journal of Medical Ethics 39(6): 359–366.CrossRefGoogle Scholar
  62. Singh, I. (2013) Brain talk: power and negotiation in children’s discourse about self, brain and behaviour. Sociology of Health and Illness 35(6): 813–827.CrossRefGoogle Scholar
  63. Singh, I. and Rose, N. (2009) Biomarkers in psychiatry. Nature 460(7252): 202–207.CrossRefGoogle Scholar
  64. Stewart, S.E., Geller, D.A., Jenike, M., Pauls, D., Shaw, D., Mullin, B. and Faraone, S.V. (2004) Long-term outcome of pediatric obsessive-compulsive disorder: a meta-analysis and qualitative review of the literature. Acta Psychiatrica Scandinavica 110(1): 4–13.CrossRefGoogle Scholar
  65. Stewart, S.E. et al (2013) Genome-wide association study of obsessive-compulsive disorder. Molecular Psychiatry 18(7): 788–798.CrossRefGoogle Scholar
  66. The OCD Project 2010, television program, VH1, US.Google Scholar
  67. Vrecko, S. (2006) Folk neurology and the remaking of identity. Molecular Interventions 6(6): 300–303.CrossRefGoogle Scholar
  68. Walitza, S., Wendland, J.R., Gruenblatt, E., Warnke, A., Sontag, T.A., Tucha, O. and Lange, K.W. (2010) Genetics of early-onset obsessive-compulsive disorder. European Child & Adolescent Psychiatry 19(3): 227–35.CrossRefGoogle Scholar
  69. Wilson, E.A. (2004) Psychosomatic: Feminism and the Neurological Body. Durham: Duke University Press.CrossRefGoogle Scholar

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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