Where are human subjects in Big Data research? The emerging ethics divide

Big Data and Society

Volumn 3, Issue 1, 2016, Pages

  Metcalf, Jacob ^a   Crawford, Kate ^b  

^a Data Society Research Institute   (United States)

^b NEW YORK UNIVERSITY SCHOOL OF LAW   (United States)

Author keywords

Big Data; Common Rule; critical data studies; Data ethics; human subjects

Indexed keywords

EID: 85074204802     PISSN: None     EISSN: 20539517     Source Type: Journal    
DOI: 10.1177/2053951716650211     Document Type: Article

References (80)

1. Abbott L and Grady C (2011) A systematic review of the empirical literature evaluating IRBs: What we know and what we still need to learn. Journal of Empirical Research on Human Research Ethics 6(1): 3–19.
2. American Medical Association (2015) History of AMA ethics. American Medical Association: Our history. Available at: http://www.ama-assn.org/ama/pub/about-ama/our-history/history-ama-ethics.page (accessed 21 October 2015).
3. Andrejevic M, (2014) Big data, big questions: The big data divide. International Journal of Communication 8(0): 17.
4. Annas GJ, (1992) The changing landscape of human experimentation: Nuremberg, Helsinki and beyond. Health Matrix: Journal of Law-Medicine 2(2): 119.
5. Auerbach D (2015) The silicon tower. Slate. Available at: http://www.slate.com/articles/technology/bitwise/2015/05/facebook_study_why_silicon_valley_s_incursion_into_academic_research_is.html (accessed 6 November 2015).
6. Barocas S, Nissenbaum H, (2014) Big data’s end run around procedural privacy protections. Communications of the ACM 57(11): 31–33.
7. Bassett EH, O’Riordan K, (2002) Ethics of internet research: Contesting the human subjects research model. Ethics and Information Technology 4(3): 233–247.
8. Beauchamp TL, (2011a) Viewpoint: Why our conceptions of research and practice may not serve the best interest of patients and subjects. Journal of Internal Medicine 269(4): 383–387.
9. Beauchamp TL (2011b) The distinction between research and practice. Available at: https://www.youtube.com/watch?v=qPQ2HE2CfCA (accessed 21 October 2015).
10. Beauchamp TL, Saghai Y, (2012) The historical foundations of the research-practice distinction in bioethics. Theoretical Medicine and Bioethics 33(1): 45–56.
11. Bowker GC, (2005) Memory Practices in the Sciences, Cambridge, MA: MIT Press.
12. boyd d (2014) It’s complicated: The social lives of networked teens. Yale University Press. Available at: http://dl.acm.org/citation.cfm?id=2584525 (accessed 6 November 2015).
13. boyd d, Crawford K, (2012) Critical questions for big data. Information, Communication & Society 15(5): 662–679.
14. boyd d, Levy K and Marwick AE (2014) The networked nature of algorithmic discrimination. In: Gangadharan SP, Eubanks V and Barocas S (eds) Data and Discrimination: Collected Essays, New America, pp.43–57. Available at: http://www.newamerica.org/downloads/OTI-Data-an-Discrimination-FINAL-small.pdf (accessed 30 April 2016).
15. Brunton F, Nissenbaum H, (2015) Obfuscation, Cambridge, MA: MIT Press. Available at: https://mitpress.mit.edu/books/obfuscation (accessed 27 October 2015).
16. Calo R, (2013) Consumer subject review boards: A thought experiment. Stanford Law Review Online 66: 97.
17. Committee on Revisions to the Common Rule for the Protection of Human Subjects, Committee on National Statistics, et al. (2014) Proposed Revisions to the Common Rule for the Protection of Human Subjects in the Behavioral and Social Sciences. Available at: http://www.nap.edu/read/18614/chapter/1 (accessed 21 October 2015).
18. Crawford K (2014) The test we can—and should—run on Facebook. The Atlantic. Available at: http://www.theatlantic.com/technology/archive/2014/07/the-test-we-canand-shouldrun-on-facebook/373819/ (accessed 21 January 2015).
19. Crawford K, Schultz J, (2014) Big data and due process: Toward a framework to redress predictive privacy harms. Boston College Law Review 55: 93.
20. Danyllo WA, Alisson VB, Alexandre ND, et al. (2013) Identifying relevant users and groups in the context of credit analysis based on data from Twitter. In: 2013 Third international conference on cloud and green computing (CGC), Karlsruhe, 30 September–2 October 2013, pp.587–592. New York, NY: IEEE. Available at: http://ieeexplore.ieee.org/xpls/abs_all.jsp?arnumber=6686094 (accessed 24 February 2016).
21. Department of Health and Human Services (2009) Code of Federal Regulations Title 45 – Public Welfare, Part 46 – Protection of Human Subjects. 45 Code of Federal Regulations 46. Available at: http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.html (accessed 19 October 2015).
22. Department of Health and Human Services (2015a) Notice of Proposed Rule Making: Federal Policy for the Protection of Human Subjects. Federal Register. Available at: http://www.gpo.gov/fdsys/pkg/FR-2015-09-08/pdf/2015-21756.pdf (accessed 21 October 2015).
23. Department of Health and Human Services (2015b) Notice of Proposed Rule Making: Federal Policy for the Protection of Human Subjects. Federal Register. Available at: https://s3.amazonaws.com/public-inspection.federalregister.gov/2015-21756.pdf (accessed 21 October 2015).
24. Dove ES, Townend D, Meslin EM, et al. (2016) Ethics review for international data-intensive research. Science 351(6280): 1399–1400.
25. Duster T, Matza D, Wellman D, (1979) Field work and the protection of human subjects. The American Sociologist 14: 136–142.
26. Dwork C, (2011) A firm foundation for private data analysis. Communications of the ACM 54(1): 86–95.
27. Dwork C and Mulligan DK (2013) It's not privacy, and it's not fair. Stanford Law Review Online 66: 35.
28. Franceschi-Bicchierai L (2015) Finding Muslim NYC Cabbies in trip data – Album on Imgur. Mashable. Available at: http://mashable.com/2015/01/28/redditor-muslim-cab-drivers/#0_uMsT8dnPqP (accessed 6 November 2015).
29. Frankel MS, (1989) Professional codes: Why, how, and with what impact? Journal of Business Ethics 8(2–3): 109–115.
30. Fost N, Levine RJ, (2007) The dysregulation of human subjects research. JAMA 298(18): 2196–2198.
31. Gaumnitz BR, Lere JC, (2002) Contents of codes of ethics of professional business organizations in the United States. Journal of Business Ethics 35(1): 35–49.
32. Gawande A (2007) A lifesaving checklist. New York Times, 30 December. Available at: http://www.nytimes.com/2007/12/30/opinion/30gawande.html (accessed 30 April 2016).
33. Ghooi RB, (2011) The Nuremberg Code – A critique. Perspectives in Clinical Research 2(2): 72–76.
34. Gitelman L (ed) (2013) Raw Data Is an Oxymoron. Cambridge, MA: MIT Press.
35. Grimmelmann J (2015a) The law and ethics of experiments on social media users. SSRN Scholarly Paper. Rochester, NY: Social Science Research Network. Available at: http://papers.ssrn.com/abstract=2604168 (accessed 19 October 2015).
36. Grimmelmann J (2015b) Ethical culture clashes in social media research. 2d. Laboratorium. Available at: http://2d.laboratorium.net/post/108480841510/ethical-culture-clashes-in-social-media-ressearch (accessed 6 November 2015).
37. Hauge MV, Stevenson MD, Rossmo DK, (2016) Tagging Banksy: Using geographic profiling to investigate a modern art mystery. Journal of Spatial Science 61(6): 185–190.
38. Ioannidis JPA, (2013) Informed consent, big data, and the oxymoron of research that is not research. The American Journal of Bioethics 13(4): 40–42.
39. Jackson SJ, Gillespie T and Payette S (2014) The policy knot: Re-integrating policy, practice and design in Cscw Studies of Social Computing. In: Proceedings of the 17th ACM Conference on Computer Supported Cooperative Work & Social Computing, CSCW '14, New York, NY, USA: ACM, pp. 588–602.
40. Jasanoff S, (2004) States of Knowledge: The Co-production of Science and the Social Order, London: Routledge.
41. Kaptein M, Wempe J, (1998) Twelve Gordian knots when developing an organizational code of ethics. Journal of Business Ethics 17(8): 853–869.
42. Kass N, Pronovost PJ, Sugarman J, (2008) Controversy and quality improvement: Lingering questions about ethics, oversight, and patient safety research. Joint Commission Journal on Quality and Patient Safety/Joint Commission Resources 34(6): 349–353.
43. Kitchin R, (2014) Big data, new epistemologies and paradigm shifts. Big Data & Society 1(1): 2053951714528481.
44. Kosinski M, Stillwell D, Graepel T, (2013) Private traits and attributes are predictable from digital records of human behavior. Proceedings of the National Academy of Sciences 110(15): 5802–5805.
45. Kramer ADI, Guillory JE, Hancock JT, (2014) Experimental evidence of massive-scale emotional contagion through social networks. Proceedings of the National Academy of Sciences 111(24): 8788–8790.
46. Ledford H, (2007) Human-subjects research: Trial and error. Nature 448(7153): 530–532.
47. Librett M, Perrone D, (2010) Apples and oranges: Ethnography and the IRB. Qualitative Research 10(6): 729–747.
48. Mayer-Schönberger V, Cukier K, (2013) Big Data: A Revolution That Will Transform How We Live, Work, and Think, New York: Houghton Mifflin Harcourt.
49. Meyer MN, (2014) Misjudgements will drive social trials underground. Nature 511(7509): 265–265.
50. Meyer MN (2015) Two cheers for corporate experimentation: The A/B illusion and the virtues of data-driven innovation. SSRN Scholarly Paper. Rochester, NY: Social Science Research Network. Available at: http://papers.ssrn.com/abstract=2605132 (accessed 19 October 2015).
51. Meyer MN and Chabris CF (2015) Please, corporations, experiment on us. The New York Times, 19 June. Available at: http://www.nytimes.com/2015/06/21/opinion/sunday/please-corporations-experiment-on-us.html (accessed 19 October 2015).
52. Meyer R (2014) Everything we know about Facebook's secret mood manipulation experiment. The Atlantic. Available at: http://www.theatlantic.com/technology/archive/2014/06/everything-we-know-about-facebooks-secret-mood-manipulation-experiment/373648/ (accessed 18 May 2016).
53. Metcalf J (2014) Ethics codes: History, context, and challenges. Council for Big Data, Ethics, and Society. Available at: http://bdes.datasociety.net/council-output/ethics-codes-history-context-and-challenges/ (accessed 21 October 2015).
54. Metcalf J (2016) Letter on proposed changes to the common rule. Council for Big Data, Ethics, and Society. Available at: http://bdes.datasociety.net/council-output/letter-on-proposed-changes-to-the-common-rule/ (accessed 11 January 2016).
55. Michael K, Miller KW, (2013) Big data: New opportunities and new challenges [Guest editors’ introduction]. Computer 46(6): 22–24.
56. National Commission for the Protection of Human Subjects, of Biomedical and Behavioral Research and The National Commission for the Protection of Human Subjects (1979) The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Available at: http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.html (accessed 21 October 2015)
57. Neuhaus F, Webmoor T, (2012) Agile ethics for massified research and visualization. Information, Communication & Society 15(1): 43–65.
58. Nissenbaum H, (2009) Privacy in Context: Technology, Policy, and the Integrity of Social Life, Stanford, CA: Stanford University Press.
59. Nissenbaum H, (2011) A contextual approach to privacy online. Daedalus 140(4): 32–48.
60. Nuremberg Code (1949) Trials of war criminals before the Nuremberg Military Tribunals under Control Council Law No. 10. U.S. Government Printing Office. Available at: http://www.hhs.gov/ohrp/archive/nurcode.html (accessed 21 October 2015).
61. Office for Human Research Protections (1995) Exempt research and research that may undergo expedited review. Available at: http://www.hhs.gov/ohrp/policy/hsdc95-02.html (accessed 27 October 2015).
62. Office for Human Research Protections (2008a) Secretary’s Advisory Committee on Human Research Protections Letter to HHS Secretary. Available at: http://www.hhs.gov/ohrp/sachrp/sachrpletter091808.html (accessed 27 October 2015).
63. Office for Human Research Protections (2008b) OHRP Statement Regarding The New York Times Op-Ed Entitled ‘A Lifesaving Checklist’. Health and Human Services. Available at: http://archive.hhs.gov/ohrp/news/recentnews.html#20080115 (accessed 21 October 2015).
64. Polonetsky J, Tene O, Jerome J, (2015) Beyond the common rule: Ethical structures for data research in non-academic settings. Colorado Technology Law Journal 13: 101.
65. Pronovost P, Needham D, Berenholtz S, (2006) An intervention to decrease catheter-related bloodstream infections in the ICU. New England Journal of Medicine 355(26): 2725–2732.
66. Reardon J, (2004) Race to the Finish: Identity and Governance in an Age of Genomics, Princeton, NJ: Princeton University Press.
67. Rhodes R, Azzouni J, Baumrin SB, (2011) De minimis risk: A proposal for a new category of research risk. The American Journal of Bioethics 11(11): 1–7.
68. Shea C, (2000) Don’t talk to the humans: The crackdown on social science research. Lingua Franca 10(6): 1–6.
69. Shilton K and Sayles S (2016) ‘We Aren’t All Going to Be on the Same Page About Ethics’: Ethical practices and challenges in research on digital and social media. In: Proceedings of the 49th Hawaii international conference on system sciences, Kauai, HI. Available at: https://terpconnect.umd.edu/∼kshilton/pdf/ShiltonSaylesHICSSpreprint.pdf (accessed 9 February 2016).
70. Silberman G, Kahn KL, (2011) Burdens on research imposed by Institutional Review Boards: The state of the evidence and its implications for regulatory reform. The Milbank Quarterly 89(4): 599–627.
71. Steinmann M, Shuster J, Collmann J, et al. (2015) Embedding privacy and ethical values in big data technology. In: Transparency in Social Media. Switzerland: Springer, pp.277–301. Available at: http://link.springer.com/chapter/10.1007/978-3-319-18552-1_15 (accessed 24 February 2016).
72. Thompson C, (2013) Good Science: The Ethical Choreography of Stem Cell Research, Cambridge, MA: The MIT Press.
73. Thompson DA, Kass N, Holzmueller C, (2012) Variation in local Institutional Review Board evaluations of a multicenter patient safety study. Journal for Healthcare Quality 34(4): 33–39.
74. Tockar A (2015) Riding with the Stars: Passenger Privacy in the NYC Taxicab Dataset. Neustar Research. Available at: http://research.neustar.biz/2014/09/15/riding-with-the-stars-passenger-privacy-in-the-nyc-taxicab-dataset/ (accessed 6 November 2015).
75. Tractenberg RE, Russell AJ, Morgan GJ, (2015) Using ethical reasoning to amplify the reach and resonance of professional codes of conduct in training big data scientists. Science and Engineering Ethics 21(6): 1485–1507.
76. Waldman K (2014) Facebook’s unethical experiment. Slate. Available at: http://www.slate.com/articles/health_and_science/science/2014/06/facebook_unethical_experiment_it_made_news_feeds_happier_or_sadder_to_manipulate.html (accessed 6 November 2015).
77. Walther JB, (2002) Research ethics in internet-enabled research: Human subjects issues and methodological myopia. Ethics and Information Technology 4(3): 205–216.
78. Watts DJ (2014) Lessons learned from the Facebook study. The Chronicle of Higher Education Blogs: The Conversation. Available at: http://chronicle.com/blogs/conversation/2014/07/09/lessons-learned-from-the-facebook-study/ (accessed 17 May 2016).
79. World Medical Association (1964) World Medical Association Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects. World Medical Association. Available at: http://www.wma.net/en/30publications/10policies/b3/17c.pdf (accessed 21 October 2015).
80. Zwitter A, (2014) Big data ethics. Big Data & Society 1(2): 2053951714559253.