Emerging ethical issues in digital health information: ICANN, health information, and the dot-health top-level domain

Cambridge Quarterly of Healthcare Ethics

Volumn 24, Issue 3, 2015, Pages 311-322

  Solomonides, Anthony E ^a   MacKey, Tim Ken ^b,c  

^a NORTHSHORE UNIVERSITY HEALTHSYSTEM   (United States)

^b Global Health Policy Institute   (United States)

^c UNIVERSITY OF CALIFORNIA   (United States)

Author keywords

generic; health information; information quality; Internet Corporation for Assigned Names and Numbers (ICANN); Internet openness; top level domain (gTLD)

Indexed keywords

CONSUMER HEALTH INFORMATION; ETHICS; HUMAN; INFORMATION DISSEMINATION; INTERNET; MEDICAL INFORMATION SYSTEM; PATIENT EDUCATION;

CONSUMER HEALTH INFORMATION; HEALTH INFORMATION EXCHANGE; HUMANS; INFORMATION DISSEMINATION; INTERNET; PATIENT EDUCATION AS TOPIC;

EID: 84930826681     PISSN: 09631801     EISSN: 14692147     Source Type: Journal    
DOI: 10.1017/S0963180114000632     Document Type: Article

References (60)

1. Fox S. What Ails America? Dr. Google can tell you. Pew Research Center ; 2013 Dec 17; available at http://www.Pewresearch.org/author/sfox/(last accessed 10 Aug 2014).
2. Fox S, Duggan M. Health Online 2013. Pew Research Center's Internet & American Life Project; 2013 Jan 15; available at http://pewinternet.org/Reports/2013/Health-online.aspx (last accessed 10 Aug 2014).
3. Paddock C. Dr Google and the unwise practice of self-diagnosis. Medical News Today 2012 July 23.
4. Yan D, Sengupta J. The influence of base rate and case information on health-risk perceptions: A unified model of self-positivity and self-negativity. Journal of Consumer Research 2013 Feb;39(5):931-46.
5. Smith R. Dr Google was right: Researching your symptoms can help your diagnosis. Daily Telegraph 2012 Oct 25 (London).
6. Colvile R. If we ignored Dr Google, we'd all be a lot better off: "Cyberchondriacs" don't just irritate their doctors-they do themselves an injury. Daily Telegraph 2013 Oct 9 (London).
7. Stephens-Davidowitz S. Dr. Google will see you now. New York Times 2013 Aug 9. This source reports on the "big data" finding that patterns of Google searches reveal the day-to-day state of the health of the nation.
8. Adams SA. Revisiting the online health information reliability debate in the wake of "web 2.0": An inter-disciplinary literature and website review. International Journal of Medical Informatics 2010;79:391-400.
9. AlGhamdi KM, Moussa NA. Internet use by the public to search for health-related information. International Journal of Medical Informatics 2012;81:363-73.
10. Dolce MC. The Internet as a source of health information: Experiences of cancer survivors and caregivers with healthcare providers. Oncology Nursing Forum 2011 May;38(3):353-9.
11. Warren JR, Kvasny L, Hecht ML, Burgess D, Ahluwalia JS, Okuyemi KS. Barriers, control and identity in health information seeking among African American women. Journal of Health Disparities Research and Practice 2010 Winter;3(3):68-90.
12. Neelapala P, Duvvi SK, Kumar G, Kumar BN. Do gynaecology outpatients use the Internet to seek health information? A questionnaire survey. Journal of Evaluation in Clinical Practice 2008 Apr;14(2):300-4.
13. Coberly E, Boren SA, Davis JW, McConnell AL, Chitima-Matsiga R, Ge B, et al. Linking clinic patients to Internet-based, condition-specific information prescriptions. Journal of the Medical Library Association 2010 Apr;98(2):160-4.
14. Goidela K, Kirzinger A, DeFleur M, Turcotte J. Difficulty in seeking information about health care quality and costs: The field of dreams fallacy. The Social Science Journal 2013;50:418-25.
15. Xiao N, Sharman R, Rao HR, Upadhyaya S. Factors influencing online health information search: An empirical analysis of a national cancer-related survey. Decision Support Systems 2014;57:417-27.
16. Anker AE, Reinhart AM, Feeley TH. Health information seeking: A review of measures and methods. Patient Education and Counseling 2011;82:346-54.
17. Fagnano M, Halterman JS, Conn KM, Shone LP. Health literacy and sources of health information for caregivers of urban children with asthma. Clinical Pediatrics 2012 Mar;51(3):267-73.
18. Sheng X, Simpson PM. Seniors, health information and the Internet: Motivation, ability, and Internet knowledge. CyberPsychology, Behavior and Social Networking 2013 Oct;16(3):740-6.
19. Colby SE, Johnson AL, Eickhoff A, Johnson L. Promoting community health resources: Preferred communication strategies. Health Promotion Practice 2011;12(2):271-9.
20. Friedman D, Tanner A, Rose I. Health journalists' perception of their communities and implications for the delivery of health information in the news. Journal of Community Health 2014 Apr;39(2):378-85.
21. Kelly L, Jenkinson C, Ziebland S. Measuring the effects of online health information for patients: Item generation for an e-health impact questionnaire. Patient Education and Counseling 2013;93: 433-8.
22. Chen W, Lee K-H. More than search? Informational and participatory eHealth behaviors. Computers in Human Behavior 2014;30:103-9.
23. Lederman R, Fan H, Smith S, Chang S. Who can you trust? Credibility assessment in online health forums. Health Policy and Technology 2014;3:13-25.
24. Luo C, Luo X, Schatzberg L, Sia CL. Impact of informational factors on online recommendation credibility: The moderating role of source credibility. Decision Support Systems 2013;56:92-102.
25. Kitchens B, Harle CA, Li S. Quality of health-related online search results. Decision Support Systems 2014;57:454-62.
26. Ekberg J, Gursky EA, Timpka T. Pre-launch evaluation checklist for online health-promoting communities. Journal of Biomedical Informatics 2014;47:11-17.
27. Cohen N. Editing Wikipedia pages for med school credit. New York Times 2013 Sept 29.
28. Bould MD, Hladkowicz ES, Pigford AA, Ufholz LA, Postonogova T, Shin E, Boet S. References that anyone can edit: Review of Wikipedia citations in peer reviewed health science literature. BMJ 2014;348:g1585.
29. Bernstam EV, Shelton DM, Walji M, Meric-Bernstam F. Instruments to assess the quality of health information on the World Wide Web: What can our patients actually use? IJMI 2005; 74(1):13-19.
30. Silberg WM, Lundberg GD, Musacchio RA. Assessing, controlling, and assuring the quality of medical information on the Internet: Caveant lector et viewor-Let the reader and viewer beware. JAMA 1997 Apr 16;277(15):1244-5.
31. Charnock D, compiler. The DISCERN Handbook Quality Criteria for Consumer Health Information on Treatment Choices. Radcliffe Medical Press, Abingdon, Oxon ; 1998 ; available at http://www.discern. org.uk/discern.pdf (last accessed 10 Aug 2014).
32. The DISCERN Instrument ; available at http://www.discern.org.uk/discern-instrument.php (last accessed 10 Aug 2014).
33. Minervation Ltd. The LIDA Instrument: Minervation Validation Instrument for Health Care Web Sites; 2005; available at http://uwf.edu/ddawson/d3net/documents/web-usability/minervalidation. pdf (last accessed 10 Aug 2014).
34. McDonough J. Healthcare Policy: The Basics. Boston: The Access Project; 1999; available at http://www.accessproject.org/downloads/the-basics.pdf (last accessed 10 Aug 2014).
35. Pontifical Council for Social Communications. Ethics in Internet. Vatican; available at http://www.vatican.va/roman-curia/pontifical-councils/pccs/documents/rc-pc-pccs-doc-20020228-ethics-internet-en.html (last accessed 10 Aug 2014).
36. Floridi L. Information ethics: On the theoretical foundations of computer ethics. Ethics and Information Technology 1999;1(1):37-56.
37. Marckmann G, Goodman KW. Introduction: Ethics of information technology in health care. International Review of Information Ethics 2006 Sept;5:2-5.
38. The Hastings Center. From Birth to Death and Bench to Clinic: The Hastings Center Bioethics Briefing Book for Journalists, Policymakers, and Campaigns ; available at http://www.thehastingscenter.org/Publications/BriefingBook/Default.aspx (last accessed 10 Aug 2014).
39. Liang BA, Mackey TK, Lovett KM. eHealth ethics: The online medical marketplace and emerging ethical issues. Ethics in Biology, Engineering and Medicine 2011;2(3):253-65.
40. Eysenbach G. What is e-health? Journal of Medical Internet Research 2001;3(2):e20.
41. Carey MA. The Internet Healthcare Coalition. Journal of the Academy of Nutrition and Dietetics 2001 Aug;101(8):878.
42. DeNardis L. Protocol Politics: The Globalization of Internet Governance. Cambridge, MA: MIT Press; 2009.
43. DeNardis L. The Global War for Internet Governance. New Haven, CT: Yale University Press; 2014.
44. Greeley B. The U.S. gives up its control of the free-speech Internet [technology column]. Bloomberg Businessweek 2014 17 Mar.
45. Internet governance: An online Risorgimento [Babbage science and technology column]. The Economist 2014 26 Apr.
46. Kampmark B. Liberalising internet governance: ICANN and the role of governments. Index on Censorship 2014 May 1; available at http://www.indexoncensorship.org/2014/05/liberalising-internet-governance-icann-role-governments/(last accessed 10 Aug 2014).
47. Columbia University, School of International and Public Affairs. Invited panel presentation on "Governance of the Internet"; New York; 2014 Apr 14; available at http://www.youtube.com/watch?v=rspWgWO3mWM (last accessed 10 Aug 2014).
48. Remarks made in response to questions from the audience at the Centre for International Governance Innovation Panel "Developing a Strategic Vision for Internet Governance" at the 8th Annual IGF Meeting; Bali, Indonesia; 2013 Oct; available at http://www.cigionline.org/events/conference-8th-annual-igf-meeting-bali-indonesia-cigi-panel-developing-strategic-vision-inter (last accessed 10 Aug 2014). [Transcribed from an online video of the panel discussion by the first author.]
49. DeNardis L. Hidden levers of Internet control: An infrastructure-based theory of Internet governance. Communication & Society 2012;15(5):720-38; available at http://dx.doi.org/10.1080/13691 18X.2012.659199 (last accessed 10 Aug 2014).
50. Illman J. WHO's plan to police health websites rejected. [BMJ News Roundup]. BMJ 2000 Nov 25;321:1308.
51. Charatan F. "Buyer beware" remains US policy towards information on the net BMJ 2002 Mar 9;324:566
52. Brown P. WHO calls for a health domain name to help consumers BMJ 2002 Mar 9;324:566
53. Eaton L. UK government aims to integrate health information on the internet. BMJ 2002 Mar 9;324:566.
54. Bruzek A. Will Health Make it More Likely That You'll Get Scammed? NPR.org ; Sept 2014; available at http://www.npr.org/blogs/health/2014/09/26/351416992/will-dot-health-make-it-more-likely-that-youll-get-scammed (last accessed 26 March 2015).
55. Letter from Dr. Marie-Paule Kieny, Assistant Director-General of WHO, to Dr. Stephen Crocker, Mr. Fadi Chehadé, and Mr. Cherine Chalaby of ICANN; available at https://www.icann.org/en/system/files/correspondence/kieny-to-crocker-et-al-16may14-en.pdf (last accessed 10 Aug 2014).
56. WHO. The Health Internet ; available at http://www.who.int/ehealth/programmes/governance/en/(last accessed 10 Aug 2014).
57. Mackey TK, Liang BA, Attaran A, Kohler JC. Ensuring the future of health information online. [The Lancet Correspondence.] The Lancet 2013 Oct 26;382(26):1404.
58. Mackey TK, Liang BA, Kohler JC, Attaran A. Health domains for sale: The need for global health Internet governance. [Viewpoint.] Journal of Medical Internet Research 2014;16(3):e73.
59. Eysenbach G. The new health-related top-level domains are coming: Will cureforcancer.health go to the highest bidder? [Editorial.] Journal of Medical Internet Research 2014;16(3):e62.
60. ICANN ALAC website; available at http://atlarge.icann.org/alac (last accessed 10 Aug 2014).