Treatments and Services for Neurodevelopmental Disorders on Advocacy Websites: Information or Evaluation?
|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||No keywords specified (fix it)|
|Through your library||Configure|
Similar books and articles
Coye Cheshire, Judd Antin, Karen S. Cook & Elizabeth Churchill (2010). General and Familiar Trust in Websites. Knowledge, Technology and Policy 23 (3-4):311-331.
Caroline Whitbeck (2005). Desirable Attributes of Public Educational Websites. Science and Engineering Ethics 11 (3).
Rik Crutzen, Linda de Kruif & Nanne K. de Vries (2012). You Never Get a Second Chance to Make a First Impression: The Effect of Visual Complexity on Intention to Use Websites. Interaction Studies 13 (3):469-477.
Lilian Soares Outtes Wanderley, Rafael Lucian, Francisca Farache & José Milton Sousa Filhdeo (2008). CSR Information Disclosure on the Web: A Context-Based Approach Analysing the Influence of Country of Origin and Industry Sector. Journal of Business Ethics 82 (2):369 - 378.
Kali Penney, Jeremy Snyder, Valorie A. Crooks & Rory Johnston (2011). Risk Communication and Informed Consent in the Medical Tourism Industry: A Thematic Content Analysis of Canadian Broker Websites. BMC Medical Ethics 12 (1):17-.
Amy M. Bovi (2003). Use of Health-Related Online Sites. American Journal of Bioethics 3 (3):48-52.
Ruth McCorkle (1980). An Ethical Dilemma: Information Control in Cancer Care. Bioethics Quarterly 2 (3):148-158.
Cheryl Berg & Kelly Fryer-Edwards (2008). The Ethical Challenges of Direct-to-Consumer Genetic Testing. Journal of Business Ethics 77 (1):17 - 31.
Rafael Bravo, Jorge Matute & José M. Pina (2012). Corporate Social Responsibility as a Vehicle to Reveal the Corporate Identity: A Study Focused on the Websites of Spanish Financial Entities. Journal of Business Ethics 107 (2):129-146.
Terry Carney, Fleur Aileen Beaupert, Julia Perry & David Tait, Advocacy and Participation in Mental Health Cases: Realisable Rights or Pipe-Dreams?
Karl Pajo, Louise Lee & Sarah Tong (2010). Employee-Related CSR Practices. Proceedings of the International Association for Business and Society 21:231-243.
Anita L. Allen (2011). Commercial Speech Bruises Health Privacy in the Supreme Court. Hastings Center Report 41 (6):8-9.
Added to index2011-03-03
Total downloads5 ( #160,518 of 549,699 )
Recent downloads (6 months)1 ( #63,425 of 549,699 )
How can I increase my downloads?