Does Solidarity Require "All of Us" to Participate in Genomics Research?

Publisher: Wiley-Blackwell Country of Publication: United States NLM ID: 0410447 Publication Model: Print Cited Medium: Internet ISSN: 1552-146X (Electronic) Linking ISSN: 00930334 NLM ISO Abbreviation: Hastings Cent Rep Subsets: MEDLINE

Publication: 2012- : Malden, MA : Wiley-Blackwell
Original Publication: Hastings-on-Hudson, N. Y., Institute of Society, Ethics and the Life Sciences.

Community Participation* ; Genomics* ; Research*; Humans ; Social Justice

In this paper, I interrogate an ethical obligation to participate in genomics research on the basis of solidarity. I explore two different ways in which solidarity is used to motivate participation in genomics research: as an appeal to participate in genomic research because it cultivates solidarity and as an appeal to participate in genomic research because it expresses solidarity. I critique those appeals and draw lessons from them for how we ought to understand solidarity. The working definition of solidarity that I defend is that solidarity involves recognizing another creature, person, or persons as, like ourselves, vulnerable to injustice and entails acting in ways that contribute to creating, reforming, and participating in institutions that are aimed at enhancing their flourishing. I argue that participating in genomics research is not an expression of solidarity. Participation in research may be praiseworthy, a "good thing to do," but actually cultivating and expressing solidarity requires much more of us.
(© 2020 The Hastings Center.)

The All of Us Research Program advertisement, AM New York February 20, 2019 (emphasis in original).
B. Prainsack and A. Buyx, “Solidarity Can Make a Difference: Addressing Transformations in Healthcare, Demographics and Technological Replacement,” Solidarity: New Frontiers, special issue, Bioethics 32, no. 9 (2018): 537-40, at 537.
I. Van Hoyweghen and L. Rebert, “Your Genes in Insurance: From Genetic Discrimination to Genomic Solidarity,” Personalized Medicine 9, no. 8 (2012): 871-77, at 871.
A. Wojcicki, “The Codes That Bind Us, Set Us Apart,” New York Times, August 21, 2018.
M. J. Rock and C. Degeling, “Public Health Ethics and More-Than-Human-Solidarity,” Social Science & Medicine 129 (2015): 61-67., at 62.
B. Prainsack and A. Buyx, Solidarity in Biomedicine and Beyond (Cambridge: University of Cambridge Press, 2017), 54.
B. Prainsack and A. Buyx, “Solidarity: Reflections on an Emerging Concept in Bioethics,” report commissioned by the Nuffield Council on Bioethics, November 2011, p. xiv-xv, http://nuffieldbioethics.org/wp-content/uploads/2014/07/Solidarity_report_FINAL.pdf.
B. Jennings, “Solidarity and Care as Relational Practices,” Solidarity: New Frontiers, special issue, Bioethics 32, no. 9 (2018): 553-61, at 554.
Ibid., 557.
C. Gould, “Solidarity and the Problem of Structural Injustice in Healthcare,” Solidarity: New Frontiers, special issue, Bioethics 32, no. 9 (2018): 541-52, at 545.
E. Kittay, Love's Labor: Essays on Women, Equality, and Dependency (New York: Routledge, 1999), 25.
Ibid., emphasis added. Relatedly, Gould says, “[T]o the extent that everyone can find themselves at some time or other in a situation of oppression or suffering, the need for support from others and expressions or actions of solidarity from them is a standing possibility for every individual and association (though in some cases a rather abstract one),” in C. Gould, “Transnational Solidarities,” Journal of Social Philosophy 38, no. 1 (2007): 148-64.
Jennings also maintains that our interdependency and shared vulnerability are the starting point of a recognitional and relational theory of solidarity, but in his view, solidarity does not aim explicitly at justice, as it does for Gould (see B. Jennings and A. Dawson, “Solidarity in the Moral Imagination of Bioethics,” Hastings Center Report 45, no. 5 [2015]: 31-38).
L. O. Ursin and B. Solberg, “When Is Normative Recruitment Legitimate?,” Ettik I Praksis: Nordic Journal of Applied Ethics 2, no. 2 (2008): 93-113.
Quoted in Ursin and Solberg, “When Is Normative Recruitment Legitimate?,” 107.
Ibid., 108.
National Institutes of Health, All of Us Research Program, accessed April 15, 2019, www.joinallofus.org.
K. Hens et al, “Risks, Benefits, Solidarity: A Framework for the Participation of Children in Genetic Biobank Research,” Journal of Pediatrics 158, no. 5 (2011): 842-48, at 847. See also R. Chadwick and K. Berg, “Solidarity and Equity: New Ethical Frameworks for Genetic Databases,” Nature Reviews Genetics 2, no. 4 (2001): 318-21.
Prainsack and Buyx, Solidarity in Biomedicine, 52.
Gould, “Solidarity and the Problem of Structural Injustice.”.
See, especially, C. Gould, “Freedom, Reciprocity, and Democracy,” chap. 1, and “Equal Rights, Individual Differences, and the Ideal of Self-Development: Paradoxes in the Theory of Democracy,” chap. 5 in Rethinking Democracy: Freedom and Social Cooperation in Politics, Economy, and Society (Cambridge: Cambridge University Press, 1988), and C. Gould, “Hard Questions in Democratic Theory: When Justice and Democracy Conflict,” chap. 1 in Globalizing Democracy and Human Rights (Cambridge: Cambridge University Press, 2004).
For an account of structural injustice, see I. M. Young, Political Responsibility and Structural Injustice (Lawrence, KS: University of Kansas Press, 2003).
“About the Solidarity Project,” The Solidarity Project, accessed April 15, 2019, https://www.solidarityproject.org/about.
For a defense and account of nonhuman flourishing, see R. L. Walker, “The Good Life for Non-human Animals: What Virtue Requires of Humans,” in Working Virtue: Virtue Ethics and Contemporary Moral Problems, ed. R. L. Walker and P. J. Ivanhoe (New York: Oxford University Press, 2007), 173-90.
R. Garland-Thomson, “Welcoming the Unexpected,” in Human Flourishing in an Age of Genome Editing, ed. E. Parens and J. Johnston (New York: Oxford University Press, 2019), 15-28.
C. Bliss, “Conceptualizing Race in the Genomic Age,” For “All of Us”? On the Weight of Genomic Knowledge, ed. J. M. Reynolds and E. Parens, special report, Hastings Center Report 50, no. 3 (2020): S15-S22.
Gould, “Solidarity and the Problem of Structural Injustice.”.
Bliss, “Conceptualizing Race in the Genomic Age”; J. Kolopenuk, “Provoking Bad Biocitizenship”; S. S.-J. Lee, “Excavating the Personal Genome: The Good Biocitizen in the Age of Precision Health”; and J. Reardon, “Why and How Bioethics Must Turn toward Justice: A Modest Proposal”-all in For “All of Us”? On the Weight of Genomic Knowledge, ed. J. M. Reynolds and E. Parens, special report, Hastings Center Report 50, no. 3 (2020): S23-S29, S54-S61, and S70-S76 for the latter three, respectively.
H. Jonas, “Philosophical Reflections on Experimenting with Human Subjects,” Daedalus 98, no. 2 (1969): 219-47, at 230.
Gould, “Solidarity and the Problem of Structural Injustice,” 542.
T.-N. Coates, “The Case for Reparations,” Atlantic, June 2014.
Jonas, “Philosophical Reflections,” 245.

Keywords: genomics; health inequalities; public health ethics; research ethics; solidarity

Date Created: 20200630 Date Completed: 20210507 Latest Revision: 20210507

20240105

10.1002/hast.1157

32597528