Trust and Justice in Big Data Analytics: Bringing the Philosophical Literature on Trust to Bear on the Ethics of Consent
Much bioethical literature and policy guidances for big data analytics in biomedical research emphasize the importance of trust. It is essential that potential participants trust so they will allow their data to be used to further research. However, comparatively, little guidance is offered as to what trustworthy oversight mechanisms are, or how policy should support them, as data are collected, shared, and used. Generally, “trust” is not characterized well enough, or meaningfully enough, for the term to be systematically applied in policy development. Yet points made in the philosophical literature on trust can help. They allow us, not only to better distinguish the different ways the term “trust” may be interpreted, but also to better determine how different approaches to trust can align with policy and governance—in what ways they may relate to key bioethical concepts and related laws, and in what ways they can help to balance individual and group interests in data sharing. This article draws from the philosophical literature on trust to identify a relationship among consent, trust, and justice. Specifically, parallels are drawn between “character-trustworthiness” and “natural justice,” a set of widely held legal safeguards intended to ensure decision-makers follow a pattern of procedural fairness which protects the rights of the individual and thereby maintains public confidence in the decision-making process. Relevance to traditional bioethical principles, established laws, and consent procedures are addressed throughout. In conclusion, policy actions are suggested.
KeywordsBig data Biomedicine Consent ELSI Ethics Human rights Information technologies Law Policy Regulation Trust UNESCO
This work was made possible by a Fellowship at Harris Manchester College, University of Oxford and the Center for Health, Law, and Emerging Technologies (HeLEX), Nuffield Department of Population Health, University of Oxford. My thanks go to Tom Simpson for sharing his unpublished essay discussed in this article, and to the reviewers of this article whose feedback helped to improve it substantially.
Compliance with Ethical Standards
Conflict of Interest
The author is a member of the Global Alliance for Genomics and Health and has helped produce some of the policy documents and ICT tools highlighted in the article.
- Aicardi, C., Del Savio, l., Dove, E., Lucivero, Niccolò Tempini, F., & Prainsack, B. (2016). Emerging ethical issues regarding digital health data. On the World Medical Association Draft Declaration on Ethical Considerations Regarding Health Databases and Biobanks. Croatian Medical Journal, 57(2), 207.CrossRefGoogle Scholar
- Baier, A. (1995). Moral prejudices: essays on ethics. Cambridge: Harvard University Press.Google Scholar
- Beauchamp, T. L., & Childress, J. F. (2001). Principles of biomedical ethics. Oxford University Press.Google Scholar
- Carter, P., Laurie, G. T., Dixon-Woods, M. (2015). The social licence for research: why care.data ran into trouble. Journal of Medical Ethics. https://doi.org/10.1136/medethics-2014-102374.
- Coleman, J. S. (1990). Foundations of social theory. Cambridge: Belknap Press.Google Scholar
- Federal Register (2017). Revisions to US Federal Policy for the Protection of Human Subjects, originally promulgated as a Common Rule in 1991. https://s3.amazonaws.com/public-inspection.federalregister.gov/2017-01058.pdf.
- Global Alliance for Genomics & Health (GA4GH) and International Rare Disease Research Consortium (IRDiRC) (2016). Automatable Discovery and Access Matrix (“ADA-M”) v1.0. Guidance document. https://genomicsandhealth.org/work-products-demonstration-projects/automatable-discovery-and-access-matrix.
- Global Alliance for Genomics and Health (2017). Global Ethics Review Recognition Policy. Policy Document. https://genomicsandhealth.org/work-products-demonstration-projects/ethics-review-recognition-policy.
- Hardin, R. (2002). Trust and trustworthiness. Russell Sage Foundation.Google Scholar
- Leetaru, K. (2016). Are research ethics obsolete in the era of big data?. https://www.forbes.com/forbes/welcome/?toURL=https://www.forbes.com/sites/kalevleetaru/2016/06/17/are-research-ethics-obsolete-in-the-era-of-big-data/&refURL=https://www.google.co.uk/&referrer=https://www.google.co.uk/
- Manyika J, Chui M, Farrell D, et al. (2013). Open data: unlocking innovation and performance with liquid information. McKinsey Global Institute. 21.Google Scholar
- Metcalf, J. (2017). Letter on Proposed Changes to the Common Rule. Council for Big Data, Ethics, and Society. Accessed July 17, 2017. http://bdes.datasociety.net/council-output/letter-on-proposed-changes-to-the-common-rule/. Al-Rodhan, Nayef. The Social Contract 2.0: Big Data and the Need to Guarantee Privacy and Civil Liberties. Harvard International Review (2014).
- Mills, P. (2015). Comments on WMA Declaration on Ethical Considerations regarding Health Databases and Biobanks (Draft 2015–03-18). Nuffield Council on Bioethics. https://nuffieldbioethics.org/wp-content/uploads/WMA-health-databases-declaration_Nuffield-Council-on-Bioethics-June-2015.pdf.
- Mittelstadt, B., and Floridi, L. (2016). The ethics of big data: current and foreseeable issues in biomedical contexts. In B. Mittelstadt and L. Floridi (Eds.), The ethics of biomedical big data. Volume 29 of the series Law, Governance and Technology Series (pp. 455–480). Springer International Publishing.Google Scholar
- National Institute of Health, ‘About the All of Us Research Program’ (2017). https://allofus.nih.gov/about/about-all-us-research-program.
- Nature Editorial. (2014). Power to the people: NHS medical records policy. Nature, 50(5), 261.Google Scholar
- O'Neill, O. (2002). Autonomy and trust in bioethics. Cambridge: Cambridge University Press.Google Scholar
- Prainsack, B., & Buyx, A. (2011). Solidarity: reflections on an emerging concept in bioethics. London: Nuffield Council on Bioethics.Google Scholar
- Prainsack, B., & Buyx, A. (2016). Solidarity in Biomedicine and Beyond (Vol. 33). Cambridge University Press.Google Scholar
- Richards, M. R., Anderson, S., Hinde, J., Kaye, J., Lucassen, A., Matthews, P., Parker, M., et al. (2015). The collection, linking and use of data in biomedical research and health care: ethical issues. London: Nuffield Council on Bioethics https://nuffieldbioethics.org/wp-content/uploads/Biological_and_health_data_web.pdf.Google Scholar
- Sankar, P.L., and Parker, L.S. (2016). The precision medicine initiative’s all of us research program: an agenda for research on its ethical, legal, and social issues. Genetics in Medicine 19, 743–750. https://doi.org/10.1038/gim.2016.183.
- Shrack, T. D., Ruff, A. M. and Johnson, M. T. (2015). Proposed revisions to the common rule receive harsh criticism from industry stakeholders. http://www.lexology.com/library/detail.aspx?g=2a59a3ee-c9ee-40d4-91a4-b7b5d698d76c.
- Simpson, T. (2012). What Is Trust?. Pacific Philosophical Quarterly, 93(4), 550–569.Google Scholar
- Sterckx, S., Rakic, V., Cockbain, J., & Borry, P. (2016). “You hoped we would sleep walk into accepting the collection of our data”: controversies surrounding the UK care.data scheme and their wider relevance for biomedical research. Medicine, Health Care and Philosophy., 19(2), 177–190. https://doi.org/10.1007/s11019-015-9661-6.CrossRefGoogle Scholar
- UK’s Department for Business Innovation and Skills (2011). The Strategy for UK Life Sciences. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/32457/11-1429-strategy-for-uk-life-sciences.pdf.
- UNESCO (1997). Declaration on the Human Genome and Human Rights. http://www.unesco.org/new/en/social-and-human-sciences/themes/bioethics/human-genome-and-human-rights/.
- UNESCO (2003). International Declaration on and Human Genetic Data. http://www.unesco.org/new/en/social-and-human-sciences/themes/bioethics/human-genetic-data/.
- UNESCO (2005). Universal Declaration on Bioethics and Human Rights. http://www.unesco.org/new/en/social-and-human-sciences/themes/bioethics/bioethics-and-human-rights/.
- United Nations (1948). International Declaration of Human Rights. http://www.un.org/en/universal-declaration-human-rights/.
- Vayena, E., Brownsword, R., Edwards, S. J., Greshake, B., Kahn, J. P., Ladher, N, Montgomery, J. et al. (2015). Research led by participants: a new social contract for a new kind of research. Journal of Medical Ethics. medethics-2015.Google Scholar
- Woolley, J. P. (2016). How data are transforming the landscape of biomedical ethics: the need for ELSI metadata on consent. In B. Mittelstadt and L. Floridi (Eds.), The ethics of biomedical big data. Volume 29 of the series Law, Governance and Technology Series (pp. 171–197). Springer International Publishing.Google Scholar
- World Medical Association (2016). Declaration of Taipei on Ethical Considerations regarding Health Databases and Biobanks. http://www.wma.net/en/30publications/10policies/d1/.