Treatments and Services for Neurodevelopmental Disorders on Advocacy Websites: Information or Evaluation?
First Online: 25 February 2011 Received: 01 November 2010 Accepted: 30 January 2011 DOI:
10.1007/s12152-011-9102-z Cite this article as: Di Pietro, N.C., Whiteley, L. & Illes, J. Neuroethics (2012) 5: 197. doi:10.1007/s12152-011-9102-z Abstract
The Internet has quickly gained popularity as a major source of health-related information, but its impact is unclear. Here, we investigate the extent to which advocacy websites for three neurodevelopmental disorders—cerebral palsy (CP), autism spectrum disorder (ASD) and fetal alcohol spectrum disorder (FASD)—inform stakeholders about treatment options, and discuss the ethical challenges inherent in providing such information online. We identified major advocacy websites for each disorder and assessed website accountability, the number, attributes, and accessibility of treatments described, and the valence of treatment information. With the exception of FASD websites, we found that advocacy websites provide a plethora of information about a wide variety of readily available products and services. Treatment information is primarily targeted at families and is overwhelmingly encouraging, regardless of the type or conventionality of treatments. Many websites acknowledge corporate sponsors. While the majority do not overtly advertise or endorse specific brands, they also do not prominently display disclaimers about the nature and intent of treatment information. Thus, while advocacy websites are organized to serve as information clearinghouses, they implicitly appear to provide endorsement of selected treatments and services. We conclude with recommendations for new partnerships between government-funded health organizations, advocacy and investigators to make more transparent the role of online information in informing treatment options and improving the evaluation of information.
Keywords Autism Cerebral Palsy Fetal Alcohol Syndrome Disorder Treatments Internet Advocacy Neuroethics References
Sonnenberg, F.A. 1997. Health information on the internet: Opportunities and pitfalls.
Archives of Internal Medicine
Neuhauser, L., and G.K. Kreps. 2003. Rethinking communication in the E-health era.
Journal of Health Psychology
Impicciatore, P., C. Pandolfini, N. Casella, and M. Bonati. 1997. Reliability of health information for the public on the World Wide Web: A systematic survey of advice on managing fever in children at home.
Mandl, K.D., S. Feit, B.M.G. Pena, and I.S. Kohane. 2000. Growth and determinants of access in patient e-mail and internet use.
Archives of Pediatrics & Adolescent Medicine 154: 508–511.
White, M., and S.M. Dorman. 2001. Receiving social support online: Implications for health education.
Health Education Research
Tuffrey, C., and S. Finlay. 2002. Use of the internet by parents of pediatric outpatients.
Archives of Disease in Childhood
Larsson, M. 2009. A descriptive study of the use of the Internet by women seeking pregnancy-related information.
Goldman, R.D., and A. Macpherson. 2006. Internet health information use and e-mail access by parents attending a paediatric emergency department.
Emergency Medicine Journal
Wainstein, B.K., K. Sterling-Levis, S.A. Baker, J. Taitz, and M. Brydon. 2006. Use of the Internet by parents of paediatric patients.
Journal of Paediatrics and Child Health
American Psychiatric Association. 2000.
Diagnostic and Statistical Manual of Mental Disorders 4th ed, text revision. Washington, DC: American Psychiatric Association
Ortega, F. 2009. The cerebral subject and the challenge of neurodiversity.
Seligman, M., and R.B. Darling. 2007.
Ordinary families, special children: A systems approach to childhood disability, 3rd ed. New York: Guilford Press.
O’Connor, M.J., and B. Paley. 2009. Psychiatric conditions associated with prenatal alcohol exposure.
Developmental Disabilities Research Reviews
Murphy-Brennan, M.G., and T.P. Oei. 1999. Is there evidence to show that fetal alcohol syndrome can be prevented?
Journal of Drug Education
Nuffield Council on Bioethics. 2010.
Medical profiling and online medicine: The ethics of ‘personalised healthcare’ in a consumer age. London: Nuffield Council on Bioethics.
Hardey, M. 2001. ‘E-health’: The internet and the transformation of patients into consumers and producers of health knowledge.
Information, Communication & Society 4(3): 388–405.
Sacchetti, P., P. Zvara, and M.K. Plante. 1999. The Internet and patient education—resources and reliability: Focus on a selected urologic topic.
Ayonrinde, O. 1998. Patients in cyberspace: Information or confusion?
Postgraduate Medical Journal
Astin, J.A. 1998. Why patients use alternative medicine: Results of a national study.
Freeman, A.D., and J.M. Freeman. 1989. No-fault cerebral palsy insurance: An alternative to the obstetrical malpractice lottery.
Journal of Health Politics, Policy and Law
Silberg, W.M., G.D. Lundberg, and R.A. Musacchio. 1997. Assessing, controlling and assuring the quality of medical information on the internet.
Krippendorff, K. 2004.
Content analysis: An introduction to its methodology, 2nd ed. Thousand Oaks: Sage Publications.
The National Center for Complementary and Alternative Medicine. Accessed 25 September 2010, from
Hanson, E., L.A. Kalish, E. Bunce, C. Curtis, S. McDaniel, J. Ware, and J. Petry. 2007. Use of complementary and alternative medicine among children diagnosed with autism spectrum disorder.
Journal of Autism and Developmental Disorders
Adams, S.A., A.A. de Bont, and M. Berg. 2006. Looking for answers, constructing reliability: An exploration into how Dutch patients “Check” web-based health information.
International Journal of Medical Informatics
Mager, A. 2009. Mediated health. Socio-technical practices of providing and using online health information.
New Media and Society
Caruso, D. 2010. Autism in the US: Social movement and legal change.
American Journal of Law & Medicine 36: 1–86.
Offit, P. 2008.
Autism’s false prophets: Bad science, risky medicine, and the search for a cure. New York: Columbia University Press.
Kaimal, A.J., Y.W. Cheng, A.S. Bryant, M.E. Norton, B.L. Shaffer, and A.B. Caughey. 2008. Google obstetrics: who is educating our patients?
American Journal of Obstetrics and Gynecology
Neff, J. 1999. Internet could see more Web site sponsorships.
Advertising Age 70(11): s6–s7.
McKinley, J., H. Cattermole, and C.W. Oliver. 1999. The quality of surgical information on the Internet.
Journal of the Royal College of Surgeons of Edinburgh 44: 265–268.
Evans, M., A. Shaw, E.A. Thompson, S. Falk, P. Turton, T. Thompson, and D. Sharp. 2007. Decisions to use complementary and alternative medicine (CAM) by male cancer patients: Information-seeking roles and types of evidence used.
BMC Complementary and Alternative Medicine
Fox, S. 2006.
Pew internet and American life project: Online health search 2006
. Accessed: October 2010,
Jacoby, J., D.E. Speller, and C. Kohn Berning. 1974. Brand choice as a function of information load: replication and extension.
Journal of Marketing Research 1(1): 33–42.
Scammon, D.L. 1975. “Information load” and consumers.
Journal of Consumer Research 4(3): 148–155.
Green, V.A. 2007. Parental experience with treatments for autism.
Journal of Developmental and Physical Disabilities
Akins, R.S., K. Angkustsiri, and R.L. Hansen. 2010. Complementary and alternative medicine in autism: an evidence-based approach to negotiating safe and efficacious interventions with families.
Canadian Institutes of Health Research.
Funded Research Database.
Accessed 25 October 2010, from
May, P.A., and J.P. Gossage. 2001. Estimating the prevalence of fetal alcohol syndrome: A summary. The National Institute on Alcohol Abuse and Alcoholism.
Alcohol Research & Health 25: 159–167.
Toutain, S., and C. Lejeune. 2008. Family management of infants with fetal alcohol syndrome or fetal alcohol spectrum disorders.
Journal of Developmental and Physical Disabilities
Cline, R.J.W., and K.M. Haynes. 2001. Consumer health information seeking on the internet: The state of the art.
Health Education Research
Fox, S. and L. Rainie. 2000.
Pew internet and american life project: The online health care revolution: How the Web helps Americans take better care of themselves.
Accessed: October 2010, from
Barwick, M., K. Boydell, E. Stasiulis, H. Ferguson, K. Blasé, and D. Fixsen. 2005.
Knowledge transfer and evidence based practice in children’s mental health. Toronto: Children’s Mental Health Ontario.
Symes, D.M., B. Remington, T. Brown, and P.R. Hastings. 2006. Early intensive behavioral intervention for children with autism: Therapists’ perspectives on achieving procedural fidelity.
Research in Developmental Disabilities
Vismara, A.L., and S.J. Rogers. 2010. Behavioral treatments in autism spectrum disorder: What do we know?
Annual Review of Clinical Psychology
Eikeseth, S., T. Smith, E. Jahr, and S. Eldevik. 2002. Intensive behavioral treatment at school for 4- to 7-year-old children with autism: A 1-year comparison controlled study.
Jacobson, J. 2000. Early intensive behavioral intervention: Emergence of a consumer-driven service model.
The Behavior Analyst 23: 149–171.
National Research Council. 2001.
Educating children with autism. Washington: National Academy Press. Copyright information
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