Abstract
Digital technology that is prevalent in people's everyday lives, including smart home devices, mobile apps and social media, increasingly lack regulations for how the user data can be collected, used or disseminated. The CSCW and the larger computing community continue to evaluate and understand the potential negative impacts of research involving digital technologies. As more research involves digital data, Institutional Review Boards (IRBs) take on the difficult task of evaluating and determining risks--likelihood of potential harms--from digital research. Learning more about IRBs' role in concretizing harm and its likelihood will help us critically examine the current approach to regulating digital research, and has implications for how researchers can reflect on their own data practices. We interviewed 22 U.S.-based IRB members and found that, for the interviewees, "being digital" added a risk. Being digital meant increasing possibilities of confidentiality breach, unintended collection of sensitive information, and unauthorized data reuse. Concurrently, interviewees found it difficult to pinpoint the direct harms that come out of those risks. The ambiguous, messy, and situated contexts of digital research data did not fit neatly into current human subjects research protection protocols. We discuss potential solutions for understanding risks and harms of digital technology and implications for the responsibilities of the CSCW and the larger computing community in conducting digital research.
- Jacob Abbott, Haley MacLeod, Novia Nurain, Gustave Ekobe, and Sameer Patil. 2019. Local Standards for Anonymization Practices in Health, Wellness, Accessibility, and Aging Research at CHI. In Proceedings of the CHI Conference on Human Factors in Computing Systems. Paper 462. https://doi.org/10.1145/3290605.3300692Google ScholarDigital Library
- Paul Baran. 1967. The Future Computer Utility. The Public Interest, Vol. 8 (1967), 75.Google Scholar
- Hugh Beyer and Karen Holtzblatt. 1997. Contextual Design: Defining Customer-Centered Systems. Morgan Kaufmann.Google ScholarDigital Library
- Allan M. Brandt. 1978. Racism and Research: the Case of the Tuskegee Syphilis Study. Hastings Center Report (1978), 21--29. https://doi.org/10.2307/3561468Google Scholar
- Samantha Breslin, Martine Shareck, and Daniel Fuller. 2019. Research Ethics for Mobile Sensing Device Use by Vulnerable Populations. Social Science & Medicine, Vol. 232 (July 2019), 50--57. https://doi.org/10.1016/j.socscimed.2019.04.035Google ScholarCross Ref
- Kyle B. Brothers, Suzanne M. Rivera, R. Jean Cadigan, Richard R. Sharp, and Aaron J. Goldenberg. 2019. A Belmont Reboot: Building a Normative Foundation for Human Research in the 21st Century. The Journal of Law, Medicine & Ethics, Vol. 47, 1 (April 2019), 165--172. https://doi.org/10.1177/1073110519840497Google ScholarCross Ref
- Amy Bruckman. 2002. Studying the Amateur Artist: A Perspective on Disguising Data Collected in Human Subjects Research on the Internet. Ethics and Information Technology, Vol. 4, 3 (2002), 217--231. https://doi.org/10.1023/A:1021316409277Google ScholarDigital Library
- Michael Butterworth. 2018. The ICO and Artificial Intelligence: The Role of Fairness in the GDPR Framework. Computer Law and Security Review, Vol. 34, 2 (2018), 257--268. https://doi.org/10.1016/j.clsr.2018.01.004Google ScholarCross Ref
- Centers for Disease Control and Prevention and others. 2003. HIPAA Privacy Rule and Public Health: Guidance from CDC and the U.S. Department of Health and Human Service. MMWR: Morbidity and Mortality Weekly Report, Vol. 52, Suppl. 1 (2003), 1--17.Google Scholar
- Sharinne Crawford, Stacey Hokke, Jan M. Nicholson, Lawrie Zion, Jayne Lucke, Patrick Keyzer, and Naomi Hackworth. 2019. "It's Not Black and White": Public Health Researchers' and Ethics Committees' Perceptions of Engaging Research Participants Online. Internet Research, Vol. 29, 1 (Feb. 2019), 123--143. https://doi.org/10.1108/IntR-07--2017-0278Google ScholarCross Ref
- David Dittrich and Erin Kenneally. 2012. The Menlo Report: Ethical Principles Guiding Information and Communication Technology Research. https://www.caida.org/publications/papers/2012/menlo_report_actual_formatted/Google Scholar
- Casey Fiesler and Nicholas Proferes. 2018. "Participant" Perceptions of Twitter Research Ethics. Social MediaGoogle Scholar
- Society, Vol. 4, 1 (March 2018), 205630511876336--14. https://doi.org/10.1177/2056305118763366Google Scholar
- Susan T. Fiske and Robert M. Hauser. 2014. Protecting Human Research Participants in the Age of Big Data. Proceedings of the National Academy of Sciences, Vol. 111, 38 (Sept. 2014), 13675--13676. https://doi.org/10.1073/pnas.1414626111Google ScholarCross Ref
- Bradford H. Gray. 1978. Complexities of Informed Consent. The Annals of the American Academy of Political and Social Science, Vol. 437, 1 (1978), 37--48. https://doi.org/10.1177/000271627843700104Google ScholarCross Ref
- Frederick Grinnell, John Z. Sadler, Victoria McNamara, Kristen Senetar, and Joan Reisch. 2017. Confidence of IRB/REC Members in Their Assessments of Human Research Risk: A Study of IRB/REC Decision Making in Action. Journal of Empirical Research on Human Research Ethics, Vol. 12, 3 (2017), 140--149. https://doi.org/10.1177/1556264617710386Google ScholarCross Ref
- Hana Habib, Yixin Zou, Aditi Jannu, Neha Sridhar, Chelse Swoopes, Alessandro Acquisti, Lorrie Faith Cranor, Norman Sadeh, and Florian Schaub. 2019. An Empirical Analysis of Data Deletion and Opt-Out Choices on 150 Websites. In Fifteenth Symposium on Usable Privacy and Security (SOUPS 2019). USENIX Association, Santa Clara, CA. https://www.usenix.org/conference/soups2019/presentation/habibGoogle Scholar
- Rebecca A. Hibbin, Grace Samuel, and Gjemma E. Derrick. 2018. From "a Fair Game" to "a Form of Covert Research": Research Ethics Committee Members' Differing Notions of Consent and Potential Risk to Participants Within Social Media Research. Journal of Empirical Research on Human Research Ethics, Vol. 13, 2 (Jan. 2018), 149--159. https://doi.org/10.1177/1556264617751510Google ScholarCross Ref
- Stacey Hokke, Naomi J. Hackworth, Shannon K. Bennetts, Jan M. Nicholson, Patrick Keyzer, Jayne Lucke, Lawrie Zion, and Sharinne B. Crawford. 2019. Ethical Considerations in Using Social Media to Engage Research Participants: Perspectives of Australian Researchers and Ethics Committee Members. Journal of Empirical Research on Human Research Ethics, Vol. 19, 7 (June 2019), 155626461985462--16. https://doi.org/10.1177/1556264619854629Google Scholar
- Marcello Ienca, Agata Ferretti, Samia Hurst, Milo Puhan, Christian Lovis, and Effy Vayena. 2018. Considerations for Ethics Review of Big Data Health Research: A Scoping Review. PloS one, Vol. 13, 10 (Oct. 2018), e0204937--15. https://doi.org/10.1371/journal.pone.0204937Google Scholar
- Indiana University Center for Postsecondary Research. 2018b. The Carnegie Classification of Institutions of Higher Education: 2018 Update Facts & Figures. http://carnegieclassifications.iu.edu/downloads/CCIHE2018-FactsFigures.pdfGoogle Scholar
- Indiana University Center for Postsecondary Research. 2018a. The Carnegie Classification of Institutions of Higher Education: Standard Listings. http://carnegieclassifications.iu.edu/lookup/standard.php#standard_basic2005_list Retrieved September 19, 2019 fromGoogle Scholar
- Sara R. Jordan and Phillip W. Gray. 2018. Clarifying the Concept of the "Social" in Risk Assessments for Human Subjects Research. Accountability in Research, Vol. 25, 1 (2018), 1--20. https://doi.org/10.1080/08989621.2017.1403323Google ScholarCross Ref
- Robert L. Klitzman. 2013. How IRBs View and Make Decisions about Social Risks. Journal of Empirical Research on Human Research Ethics, Vol. 8, 3 (2013), 58--65. https://doi.org/10.1525/jer.2013.8.3.58Google ScholarCross Ref
- Spyros Kokolakis. 2017. Privacy Attitudes and Privacy Behaviour: A Review of Current Research on the Privacy Paradox Phenomenon. Computers & Security, Vol. 64 (2017), 122--134. https://doi.org/10.1016/j.cose.2015.07.002Google ScholarDigital Library
- Maddie Ladner. 2018. Data Breach Notification in the United States and Territories. https://privacyrights.org/resources/data-breach-notification-united-states-and-territoriesGoogle Scholar
- Zhiqiu Lin. 2007. Policing the Wild North-West: A Sociological Study of the Provincial Police in Alberta and Saskatchewan, 1905--32 .University of Calgary Press.Google Scholar
- Holly Fernandez Lynch, Leslie E Wolf, and Mark Barnes. 2019. Implementing Regulatory Broad Consent Under the Revised Common Rule: Clarifying Key Points and the Need for Evidence. The Journal of Law, Medicine & Ethics, Vol. 47, 2 (July 2019), 213--231. https://doi.org/10.1177/1073110519857277Google ScholarCross Ref
- Nicole A. Maher, Joeky T. Senders, Alexander F.C. Hulsbergen, Nayan Lamba, Michael Parker, Jukka-Pekka Onnela, Annelien L Bredenoord, Timothy R. Smith, and Marike L.D. Broekman. 2019. Passive Data Collection and Use in Healthcare: A Systematic Review of Ethical Issues. International Journal of Medical Informatics, Vol. 129 (2019), 242--247. https://doi.org/10.1016/j.ijmedinf.2019.06.015Google ScholarCross Ref
- Jacob Metcalf and Kate Crawford. 2016. Where are Human Subjects in Big Data Research? The Emerging Ethics Divide. Big Data & Society, Vol. 3, 1 (2016). https://doi.org/10.1177/2053951716650211Google ScholarCross Ref
- Cade Metz. 2019. Facial Recognition Tech Is Growing Stronger, Thanks to Your Face. New York Times (July 13 2019). https://www.nytimes.com/2019/07/13/technology/databases-faces-facial-recognition-technology.htmlGoogle Scholar
- Evgeny Morozov. 2013. The Real Privacy Problem. MIT Technology Review, Vol. 116, 6 (2013), 32--43.Google Scholar
- National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. 1979. The Belmont report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Technical Report. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/index.htmlGoogle Scholar
- Camille Nebeker, John Harlow, Rebeca Espinoza Giacinto, Rubi Orozco-Linares, Cinnamon S Bloss, and Nadir Weibel. 2017. Ethical and Regulatory Challenges of Research Using Pervasive Sensing and Other Emerging Technologies: IRB Perspectives. AJOB Empirical Bioethics, Vol. 8, 4 (2017), 266--276. https://doi.org/10.1080/23294515.2017.1403980Google ScholarCross Ref
- US Department of Health and Human Services. 2018. Basic HHS Policy for Protection of Human Subjects (S45 CFR 46). https://www.hhs.gov/ohrp/regulations-and-policy/regulations/common-rule/index.htmlGoogle Scholar
- Office for Human Research Protections. 2019. International Compilation of Human Research Standards. Technical Report. U.S. Department of Health and Human Services.Google Scholar
- Nathaniel Raymond. 2019. Reboot Ethical Review in the Age of Big Data. Nature, Vol. 568 (2019), 277.Google ScholarCross Ref
- David B Resnik. 2017. The Role of Intuition in Risk/Benefit Decision-Making in Human Subjects Research. Accountability in Research, Vol. 24, 1 (2017), 1--29. https://doi.org/10.1080/08989621.2016.1198978Google ScholarCross Ref
- David B Resnik. 2018. Risks. In The Ethics of Research with Human Subjects: Protecting People, Advancing Science, Promoting Trust. Springer International Publishing, 165--191.Google Scholar
- Mark A Rothstein. 2015. Ethical Issues in Big Data Health Research: Currents in Contemporary Bioethics. The Journal of Law, Medicine, Ethics, Vol. 43, 2 (Aug. 2015), 425--429. https://doi.org/10.1111/jlme.12258Google ScholarCross Ref
- Yahya Salimi, Khandan Shahandeh, Hossein Malekafzali, Nina Loori, Azita Kheiltash, Ensiyeh Jamshidi, Ameneh S. Frouzan, and Reza Majdzadeh. 2012. Is Community-Based Participatory Research (CBPR) Useful? A Systematic Review on Papers in a Decade. International journal of preventive medicine, Vol. 3, 6 (2012), 386.Google Scholar
- Jeffrey Saltz, Michael Skirpan, Casey Fiesler, Micha Gorelick, Tom Yeh, Robert Heckman, Neil Dewar, and Nathan Beard. 2019. Integrating Ethics Within Machine-learning Courses. ACM Trans. Comput. Educ., Vol. 19, 4, Article 32 (Aug. 2019), 26 pages. https://doi.org/10.1145/3341164Google ScholarDigital Library
- Cynthia E Schairer, Caryn Kseniya Rubanovich, and Cinnamon S. Bloss. 2018. How Could Commercial Terms of Use and Privacy Policies Undermine Informed Consent in the Age of Mobile Health? AMA Journal of Ethics, Vol. 20, 9 (Aug. 2018), 864--872. https://doi.org/10.1001/amajethics.2018.864Google Scholar
- Katie Shilton. 2017. PERVADE. https://pervade.umd.eduGoogle Scholar
- Anselm Strauss and Juliet Corbin. 1994. Grounded Theory Methodology: An Overview. In Handbook of Qualitative Research, N. K. Denzin and Y. S. Lincoln (Eds.). Sage Publications, Inc., 273--285.Google Scholar
- Jessica Vitak, Nicholas Proferes, Katie Shilton, and Zahra Ashktorab. 2017. Ethics Regulation in Social Computing Research: Examining the Role of Institutional Review Boards. Journal of Empirical Research on Human Research Ethics, Vol. 12, 5 (July 2017), 372--382. https://doi.org/10.1177/1556264617725200Google ScholarCross Ref
- Jessica Vitak, Katie Shilton, and Zahra Ashktorab. 2016. Beyond the Belmont Principles: Ethical Challenges, Practices, and Beliefs in the Online Data Research Community. In The ACM Conference on Computer Supported Cooperative Work Social Computing. ACM Press, 941--953. https://doi.org/10.1145/2818048.2820078Google ScholarDigital Library
- Charles Weijer. 2000. The Ethical Analysis of Risk. The Journal of Law, Medicine & Ethics, Vol. 28, 4 (2000), 344--361. https://doi.org/10.1111/j.1748--720X.2000.tb00686.xGoogle ScholarCross Ref
Index Terms
- It's the Wild, Wild West: Lessons Learned From IRB Members' Risk Perceptions Toward Digital Research Data
Recommendations
Research Ethics and Regulation: An Open Forum
CSCW '18 Companion: Companion of the 2018 ACM Conference on Computer Supported Cooperative Work and Social ComputingAn ongoing challenge within the diverse HCI and social computing research communities is understanding research ethics in the face of evolving technology and methods. Building upon successful town hall meetings at ACM conferences including CSCW, CHI, ...
Exploring Ethics and Obligations for Studying Digital Communities
GROUP '16: Proceedings of the 2016 ACM International Conference on Supporting Group WorkMany of the most prominent and unanswered ethical questions within HCI and social computing involve our ethical obligation to the communities that we study. Some of these questions fall under the purview of more traditional human subjects research ...
Research ethics and computer science: an unconsummated marriage
SIGDOC '06: Proceedings of the 24th annual ACM international conference on Design of communicationThe ethical conduct of research is a cornerstone of modern scientific research. Computer science and the discipline's technological artifacts touch nearly every aspect of modern life, and computer scientists must conduct and report their research in an ...
Comments