Ethical Issues in Consumer Informatics and Online Content
- 828 Downloads
This chapter will address ethical issues in consumer informatics and online content, including quality assurance, privacy and security concerns, consent and governance, and the important role consumer information plays in shared decision-making. If privacy concerns have slowed the progress of research, new approaches such as a pool of freely available health and genomic data could accelerate innovation. This chapter will describe the range of ethical perspectives on data sharing and propose a new approach using free and open-source tools to support ethical transactions involving consumers, researchers, and health systems.
KeywordsConsent e-Consent Governance Privacy Information security Informedness Genomic data Dark patterns Data sharing Nothing about me without me
- Beymer, D., Orton, P., & Russell, D. (2007). An eye tracking study of how pictures influence online reading. In C. Baranauskas, P. Palanque, J. Abascal, & S. D. J. Barbosa (Eds.), Human-Computer Interaction – INTERACT 2007. INTERACT 2007, Lecture notes in computer science (Vol. 4663). Berlin, Heidelberg: Springer. https://doi.org/10.1007/978-3-540-74800-7_41 CrossRefGoogle Scholar
- Brignull, H. (2013, August 29). Dark Patterns: Inside the interfaces designed to trick you. Retrieved May 11, 2017, from https://www.theverge.com/2013/8/29/4640308/dark-patterns-inside-the-interfaces-designed-to-trick-you
- Delbanco, T., Berwick, D. M., Boufford, J. I., et al. (2001). Healthcare in a land called PeoplePower: Nothing about me without me. Health Expectations: An International Journal of Public Participation in Health Care and Health Policy, 4(3), 144–150. https://doi.org/10.1046/j.1369-6513.2001.00145.x CrossRefGoogle Scholar
- Goldhaber, M. H. (1997). The attention economy and the net. First Monday 2.4. Retrieved May 11, 2017, from http://firstmonday.org/article/view/519/440
- Lorigo, L., Haridasan, M., Brynjarsdóttir, H., Xia, L., Joachims, T., Gay, G., … Pan, B. (2008). Eye tracking and online search: Lessons learned and challenges ahead. Journal of the American Society for Information Science and Technology, 59, 1041–1052. https://doi.org/10.1002/asi.20794 CrossRefGoogle Scholar
- Murray, B. (2012). Informed consent: What must a physician disclose to a patient? Virtual Mentor, AMA Journal of Ethics 14(7):563–566. Retrieved August 19, 2017, from http://journalofethics.ama-assn.org/2012/07/hlaw1-1207.html
- Obar, J. A., & Oeldorf-Hirsch, A. (2016, August 24). The biggest lie on the Internet: Ignoring the privacy policies and terms of service policies of social networking services.In TPRC 44: The 44th Research Conference on Communication, Information and Internet Policy 2016. Retrieved May 11, 2017, from SSRN: https://ssm.com/abstract=2757466 or https://doi.org/10.2139/ssm.2757465
- Weinreich, H., Obendorf, H., Herder, E., & Mayer, M. (2008, February) Not quite the average: An empirical study of Web use. Association for Computing Machinery Transactions on the Web. 2(1)—also see study data reanalyzed at How Little Do Users Read? Retrieved October 19, 2015, from http://www.nngroup.com/articles/how-little-do-users-read/ Published May 6, 2008.