Parent perspectives on brain scans and genetic tests for OCD: Talking of difficult presents, desired pasts, and imagined futures
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.
KeywordsOCD 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.
- Amen Clinics (2016) Obsessive Compulsive Spectrum Disorders. Retrieved from http://www.amenclinics.com/conditions/obsessive-compulsive-spectrum-disorders/.
- 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
- American Psychiatric Association (2007) Practice Guideline for the Treatment of Patients with Obsessive-Compulsive Disorder. Arlington, VA: American Psychiatric Association. Available online at http://www.psychiatryonline.com.
- American Psychiatric Association (2015) What is Obsessive Compulsive Disorder? Arlington, VA: American Psychiatric Association. Available online at http://www.psychiatry.org/patients-families/ocd/what-is-obsessive-compulsive-disorder.
- As Good as it Gets 1997, motion picture, Gracie Films, US.Google Scholar
- Bedlam 2013, documentary, Channel 4, UK.Google Scholar
- 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.
- 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
- 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
- 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
- Charmaz, K. (2006)Constructing Grounded Theory. London: Sage.Google Scholar
- Choudhury, S. and Slaby, J. (2012) Critical Neuroscience: A Handbook of the Social and Cultural Contexts of Neuroscience. Chichester: Wiley-Blackwell.Google Scholar
- 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
- 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
- Extreme OCD Camp 2013, television program, BBC3, UK.Google Scholar
- Fox Keller, E. (2000) The Century of the Gene. Harvard, MA: Harvard University Press.Google Scholar
- Gillihan, S.J. (2016) Using brain scans to diagnose mental disorders: Unfortunately, the science isn’t there [Blog post on Psychology Today]. Retrieved from https://www.psychologytoday.com/blog/think-act-be/201605/using-brain-scans-diagnose-mental-disorders.
- Glaser, B. (1978) Theoretical Sensitivity: Advances in the Methodology of Grounded Theory. Mill Valley, CA: Sociology Press.Google Scholar
- 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
- Marris, C., & Rose, N. (2012) Let’s get real on synthetic biology. New Scientist, 2868. Google Scholar
- Mol, A. (2003) The Body Multiple. Durham, North Carolina: Duke University Press.Google Scholar
- Monk (2002–2009), television program, USA Network, US.Google Scholar
- NIMH (2010) Neuroimaging and Mental Illness: A Window Into the Brain [Pamphlet]. Retrieved from https://www.nimh.nih.gov/health/publications/neuroimaging-and-mental-illness-a-window-into-the-brain/neuroimaging-faq_58327.pdf.
- OCD Foundation (2014) Treatment of OCD, viewed 17 May 2014, http://www.ocfoundation.org/treatment.aspx.
- Pauls, D.L. (2010) The genetics of obsessive-compulsive disorder: A review. Dialogues in Clinical Neuroscience 12(2): 149–163.Google Scholar
- Phoebe in Wonderland 2008, motion picture, Red Envelope Entertainment, US.Google Scholar
- The OCD Project 2010, television program, VH1, US.Google Scholar