Abstract
Over the past decade, through ongoing and cascading innovation in technology and service models, and encouraged by the significant policy and financial supports of governments, eHealth is taking a central role in the evolution of healthcare. eHealth is sometimes viewed as an answer to many of the gaps or failings in healthcare; however, care must be taken in the deployment of these technologies, to ensure that they respond effectively to a broad range of ethical issues, such as privacy (patient information confidentiality and patient health record security), accessibility (including both design and economic accessibility), and free and fully informed consent. This chapter first posits that eHealth is part of a broader evolution in healthcare, and necessarily impacts the place of ethics in the health context. We then examine different frameworks that could be used in assessing ethical issues, along with the strengths and weaknesses of the frameworks as they aim to identify key issues such as privacy, data protection and safety. Finally, a scenario-based ethical impact assessment is suggested and illustrated as a means to ensure that the design and deployment of eHealth solutions effectively respond to the broader range of ethical concerns. We recommend further study to create a comprehensive framework for ethical impact assessment in the context of eHealth.
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- 1.
Eysenbach (2001), p. e20. Based on the author’s speech delivered at UNESCO, Paris, June 2001, Conference of the International Council for Global Health Progress: Global health equity—Medical progress & quality of life in the twenty-first century. http://www.jmir.org/2001/2/e20/.
- 2.
- 3.
Lafortune et al. (2007).
- 4.
European Commission, Lead Market Initiative for Europe, Commission Staff Working Document, Brussels, 9 Sept 2009.
- 5.
Jonsen (2000).
- 6.
Moor (1985).
- 7.
Wright (2011), pp. 199–226.
- 8.
These and other benefits of engaging and consulting stakeholders before a decision has been taken have been noted by numerous scholars, experts and policy-makers. See, for just a few examples, Renn (2008), pp. 290–291, et seq.; Stern and Fineberg (1996), pp. 23–26; UK Cabinet Office, Viewfinder: A Policy Maker’s Guide to Public Involvement, London, n.d., pp. 4-5. www.nationalschool.gov.uk/policyhub/docs/Viewfinder.pdf; European Commission, European Governance: A White Paper, COM(2001) 428 final, Brussels, 25.7.2001, pp. 11–13; Stewart (2007), p. 11; OECD, Citizens as partners: OECD Handbook on Information, Consultation and Public Participation in Policy-Making, OECD, Paris, 2001, pp. 18–20.
- 9.
Beekman et al. (2006), p. 12.
- 10.
Beekman et al., p. 14.
- 11.
Beekman and Brom (2007), pp. 3–12 [pp. 3–4].
- 12.
Beekman et al., p. 21.
- 13.
Beauchamp and Childress (2001).
- 14.
Some of these codes of conduct originated from the European Commission, Communication on Quality Criteria for Health related Websites, COM (2002) 667 final.
- 15.
- 16.
- 17.
For an extensive review of PIA methodologies, see Wright and Hert (2012).
- 18.
Submission to the Australian Law Reform Commission’s Review of Privacy Issues Paper 31, February 2007.
- 19.
- 20.
- 21.
Treasury Board of Canada Secretariat (31 Aug 2002) Privacy Impact Assessment Guidelines: A framework to Manage Privacy Risks. Ottawa.
- 22.
[UK] Information Commissioner’s Office (June 2009) Privacy Impact Assessment Handbook, Version 2.0. http://www.ico.gov.uk/for_organisations/topic_specific_guides/pia_handbook.aspx.
- 23.
Van Gorp (2009), pp. 35–50.
- 24.
- 25.
- 26.
- 27.
- 28.
European Commission, e-Health—making healthcare better for European citizens: An action plan for a European e-Health Area. Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions, COM(2004) 356 final, Brussels, 30 Mar 2004, p. 15. http://ec.europa.eu/information_society/doc/qualif/health/COM_2004_0356_F_EN_ACTE.pdf.
- 29.
According to the European Commission, designing for all “encourages manufacturers and service providers to produce new technologies for everyone: technologies that are suitable for the elderly and people with disabilities, as much as the teenage techno wizard”.
- 30.
European Commission, Ageing well in the Information Society, Action Plan on Information and Communication Technologies and Ageing, An i2010 Initiative, Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions, COM(2007) 332 final, Brussels, 14 June 2007.
- 31.
See the statement by Oracle: “Oracle Welcomes New EU Policy on e-Inclusion”.
- 32.
European Commission, European i2010 initiative on e-Inclusion: “To be part of the information society”, Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions, COM(2007) 694 final, Brussels, 8 Nov 2007, pp. 4–5.
- 33.
ISO/IEC 15408 Information technology—Security techniques—Evaluation criteria for IT security, First edition, International Organization for Standardization, Geneva, 2009.
- 34.
COM(2004) 356 final, op. cit., p. 17.
- 35.
See Directive 2011/24/EU of the European Parliament and of the Council of 9 March 2011 on the application of patients’ rights in cross-border healthcare.
- 36.
Boddy (2004), p. 39. LOCOMOTION was a project funded by the European Commission’s Fifth Framework Programme (FP5). The cited report is no longer available on the Web, although the authors have a copy.
- 37.
Commission of the European Communities, Proposal for a Council Directive on implementing the principle of equal treatment between persons irrespective of religion or belief, disability, age or sexual orientation, COM(2008) 426 final, Brussels, 2.7.2008. http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=COM:2008:0426:FIN:EN:PDF.
- 38.
- 39.
See Opinion 15/2011 on the definition of consent, WP187, Adopted on 13 July 2011. http://ec.europa.eu/justice/policies/privacy/docs/wpdocs/2011/wp187_en.pdf.
- 40.
- 41.
Long et al. (2003), pp. 578–583.
- 42.
Palm and Hansson (2006), pp. 543–558 [ p. 552].
- 43.
- 44.
Brey (2000), pp. 125–129. Prior to this, Moor commented that “From the point of view of ethical theory, privacy is a curious value. On the one hand, it seems to be something of very great importance and something vital to defend, and, on the other hand, privacy seems to be a matter of individual preference, culturally relative, and difficult to justify in general.” He goes on to argue that privacy has both instrumental value (that which is good because it leads to something else which is good) and intrinsic value (that which is good in itself). Moor (1997), pp. 27–32.
- 45.
European Commission (2004) e-Health - making healthcare better for European citizens: An action plan for a European e-Health Area, Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions, COM(2004) 356 final, Brussels, 30 Mar 2004, p. 14. http://ec.europa.eu/information_society/doc/qualif/health/COM_2004_0356_F_EN_ACTE.pdf.
- 46.
Flanagan et al. (2008), pp. 322–353.
- 47.
Flanagan et al. (2008), p. 335.
- 48.
Neupert (2009).
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Acknowledgment
This paper is based in part on work undertaken in the PRESCIENT (Privacy and Emerging Sciences and Technologies, grant agreement SIS-CT-2009-244779) project funded under the European Commission’s Seventh Framework Programme. The views in this paper are those of the authors alone and are in no way intended to reflect those of the European Commission.
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Wadhwa, K., Wright, D. (2013). eHealth: Frameworks for Assessing Ethical Impacts. In: George, C., Whitehouse, D., Duquenoy, P. (eds) eHealth: Legal, Ethical and Governance Challenges. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-22474-4_8
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