Moving out of the Human Vivarium
Live-in Laboratories and the Right to Withdraw
DOI:
https://doi.org/10.55613/jeet.v33i1.103Keywords:
research ethics, right to withdraw, smart home, experimental homes, data subjects, live-in laboratory, human experimentationAbstract
Homes are increasingly being built as sensor-laden living environments to test the performance of novel technologies in interaction with real people. When people’s homes are turned into the site of experiments, the inhabitants become research subjects. This paper employs findings from biomedical research ethics to evaluate live-in laboratories and argues that when live-in laboratories function as a participant’s main residence, they constrain an individual’s so-called ‘right to withdraw’. Withdrawing from the live-in laboratory as a participant’s main residence means losing one’s home, which creates negative financial and psychological consequences for participants. I will argue that such costs conflict with a participants’ right to withdraw on two counts. First, that the exit costs from the live-in laboratory constitute a penalty, and second, that the costs of withdrawing from the live-in laboratory function as a constraint on a participant’s liberty. The paper concludes that (i) the right to withdraw is a necessary condition for the ethical permissibility of modern live in lab experiments and conclude (ii) the practice of making an experimental home as a participant’s main residence is ethically problematic.
References
(Alavi et. al. 2020) Alavi, Hamed S., Denis Lalanne, en Yvonne Rogers. 2020. “The Five Strands of Living Lab: a Literature Study of the Evolution of Living Lab Concepts in HCI”. ACM Trans-actions on Computer-Human Interaction (TOCHI) 27 (2): 1–26. DOI: 10.1145/3380958
(Baccarne et al 2014) Baccarne, Bastiaan, Dimitri Schuurman, Peter Mechant and Lieven De Ma-rez. 2014. “The Role of Urban Living Labs in a Smart City”. Presented at the XXV ISPIM In-novation Conference, Manchester.
(Beauchamp 1995) Beauchamp, Tom L. 1995. “Principlism and its Alleged Competitors”. Kennedy Institute of Ethics Journal, 5(3), 181–198.
(Beauchamp 2016) Beauchamp, Tom L. 2016. “Principlism in Bioethics”. In Bioethical Decision Making and Argumentation, edited by Pedro Serna and José-Antonio Seoane, 1–16. Springer International Publishing. DOI: 10.1007/978-3-319-43419-3_1
(Beauchamp and Childress, 2001) Beauchamp, Tom L. and James F. Childress. 2001. Principles of Biomedical Ethics. Oxford University Press.
(Benbunan-Fich 2017 )Benbunan-Fich, Raquel. 2017. “The Ethics of Online Research With Unsus-pecting Users: From A/B Testing to C/D Experimentation”. Research Ethics, 13(34): 200–218. DOI: 10.1177/1747016116680664
(Carter 2021) Carter, Ian. 2021. “Positive and Negative Liberty”. Stanford Encyclopedia of Phi-losophy, Accessed 22 December 2021. http://plato.stanford.edu/archives/spr2012/entries/liberty-positive-negative/.
(CIOMS, 2016) Council for International Organizations of Medical Sciences (CIOMS). 2016. Inter-national Ethical Guidelines for Health-related Research Involving Humans. Accessed 07 January 2022. https://cioms.ch/wp-content/uploads/2017/01/WEB-CIOMS-EthicalGuidelines.pdf
(Green Village, 2021) Green Village. 2021. Dreamhûs. Accessed 19 December 2021. https://thegreenvillage
.org/project/dreamhus/
(Edwards 2005) Edwards, Sarah J. 2005. “Research participation and the Right to Withdraw”. Bio-ethics, 19(2), 112–130. DOI: 10.1111/j.1467-8519.2005.00429.x
(Fehlmann, 2019) Fehlmann, Thomas. 2019. “Testing Artificial Intelligence”. European conference on software process improvement. 709–721. DOI: 10.1007/978-3-030-28005-5_55
(Feinberg 1965) Feinberg, Joel. 1965. “The Expressive Function of Punishment”. The Monist 49(3): 397–423. DOI: 10.5840/monist196549326
(Fernandez Lynch 2020) Fernandez Lynch, Holly. 2020. “The Right to Withdraw from Controlled Human Infection Studies: Justifications and Avoidance”. Bioethics 34(8): 833–848. DOI: 10.1111/bioe.12704
(Galič 2019) Galič, Maša. 2019. “Surveillance, Privacy and Public Space in the Stratumseind Liv-ing Lab: The Smart City Debate, Beyond Data”. Ars Aequi, special issue July/August.
(Holm, 2011) Holm, Soren. 2011. “Withdrawing from Research: a Rethink in the Context of Re-search Biobanks”. Health Care Analysis, 19(3): 269–281. DOI: 10.1007/s10728-011-0194-8
(Intille et. al. 2005) Intille, Stephen S., Kent Larson, Jennifer Beaudin, et al. 2005. “The Placelab: A Live-in Laboratory for Pervasive Computing Research (video)”. Proceedings of PERVASIVE 2005 Video Program.
(Johnson and Bond 1980) Johnson, Charles A. and Jon R. Bond. 1980. “Coercive and Noncoercive Abortion Deterrence Policies: a Comparative State Analysis”. Law & Policy, 2(1): 106–128. DOI: 10.1111/j.1467-9930.1980.tb00206.x
(Levine 1996) Levine, R. J. 1996. “International Codes and Guidelines for Research Ethics: a Criti-cal Appraisal”. In The Ethics of Research Involving Human Subjects: Facing the 21st Century, edit-ed by Harold Y. Vanderpool, 235–259. Frederick, Md: University Publishing Group.
(Maas et al. 2017) Maas, Timo, Jos van den Broek, Jasper Deuten. 2017. “Living Labs in Neder-land: van Open Testfaciliteit tot Levend Lab”. Rathenau Instituut.
(McDermott and Hatemi 2020) McDermott, Rose, and Peter K. Hatemi. 2020. “Ethics in field ex-perimentation: A Call to Establish New Standards to Protect the Public from Unwanted Ma-nipulation and Real Harms”. Proceedings of the National Academy of Sciences, 117(48): 30014–30021. DOI: 10.1073/pnas.2012021117
(McNeill 1993) McNeill, Paul M. 1993. The ethics and politics of human experimentation. Cambridge: Cambridge University Press.
(Melham et al 2014) Melham, Karen, Linda Briceno Moraia, Colin Mitchell, Michael Morrison, Harriet Teare and Jane Kaye. 2014. “The Evolution of Withdrawal: Negotiating Research Re-lationships in Biobanking”. Life Sciences, Society and Policy, 10(1): 1–13. DOI: 10.1186/s40504-014-0016-5
(Morris et al 2017) Morris, Tim, David Manley, Kate Northstone and Clive Sabel. 2017. “How Do Moving and Other Major Life Events Impact Mental Health? a Longitudinal Analysis of UK Children”. Health & place, 46: 257–266. DOI: 10.1016/j.healthplace.2017.06.004
(National 1979) 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. Washington, DC: Department of Health, Education and Welfare. Accessed March 14th, 2022. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html
(Nelson and Merz 2002) Nelson, Robert M., and Jon F. Merz. 2002. “Voluntariness of Consent for Research: an Empirical and Conceptual Review”. Medical care, 69–80.
(Nuremburg Code 1949) Nuremburg Code. 1949. In Trials of War Criminals before Nuremburg Mili-tary Tribunals, Washington, DC: US Government Printing Office.
(Ranchordas 2021) Ranchordas, Sofia. 2021. “Experimental Regulations for AI: Sandboxes for Morals and Mores”. University of Groningen Faculty of Law Research Paper, 1.
(Schaefer and Wertheimer 2010) Schaefer, Owen G. and Alan Wertheimer. 2010. “The Right to Withdraw from Research”. Kennedy Institute of Ethics Journal, 20(4): 329–352.
(Schwartz et al 2015) Schwartz, Tobias, Gunnar Stevens, Timo Jakobi, et al. 2015. “What People Do with Consumption Feedback: a Long-term Living Lab Study of a Home Energy Manage-ment System”. Interacting with Computers, 27(6): 551–576. DOI: 10.1093/iwc/iwu009
(Spillman, 2007) Spillman, Monique A, and Robert M. Sade. 2007. “Clinical Trials of Xenotrans-plantation: Waiver of the Right to Withdraw from a Clinical Trial Should Be Required”. Jour-nal of Law, Medicine & Ethics, 35(2): 265–272. DOI: 10.1111/j.1748-720X.2007.00135.x
(Taylor 2020) Taylor, Linnet. 2020. “Exploitation as Innovation: Research Ethics and the Govern-ance of Experimentation in the Urban Living Lab”. Regional Studies, 1–11. DOI: 10.1080/00343404.2020.1826421
(Van de Poel 2016) Van de Poel, Ibo. 2016. “An Ethical Framework for Evaluating Experimental Technology”. Science and engineering ethics, 22(3): 667–686. DOI: 10.1007/s11948-015-9724-3
(Wilson and Hunter 2010) Wilson, James and David Hunter. 2010. “Research Exceptionalism”. The American Journal of Bioethics, 10(8): 45–54. DOI: 10.1080/15265161.2010.482630
(World Medical Association 2013) World Medical Association. 2013. Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects. Accessed 07 January 2022. https://www.wma.net/what-we-do/medical-ethics/declaration-of-helsinki/doh-oct2008/
Downloads
Published
Issue
Section
License
Copyright (c) 2023 Joost Mollen
This work is licensed under a Creative Commons Attribution 4.0 International License.
- Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a Creative Commons Attribution 4.0 International license (CC-BY 4.0) that allows others to share the work with an acknowledgment of the work's authorship and initial publication in this journal.
- Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgment of its initial publication in this journal.
- Authors are encouraged to post their work online (e.g., in institutional repositories or on their website) after publication, while providing bibliographic details that credit JEET (See The Effect of Open Access).