The Indignity Of Abstraction: Datamining and Autonomy in the Age of Direct to Consumer Genomics

Bruce Arnold, Wendy Bonython


Direct To Consumer Genomics services such as 23AndMe and promise to foster medical research and deepen personal connection through sharing information about the human genome. This article contextualises those promises by asking questions about dignity. The services and the legal frameworks in which they operate are predicated on abstracting people as sets of genetic data. The commonality of that data among biological relatives means that individuals who gift a service with data about themselves are disregarding the autonomy of relatives who might not want to be genetically datamined. Law about such genomics should acknowledge Kant’s wariness about abstracting people as a means to an end.

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Bruce Arnold and Wendy Bonython, ‘Not As Good as Gold: Genomics, Data and Dignity’ in Monique Mann, Kate Devitt and Angela Daly (eds), Good Data (Institute of Network Culture, 2019) 135

Michael G. Artin, Deborah Stiles, Krzysztof Kiryluk and Wendy K. Chung, ‘Cases in Precision Medicine: When Patients Present With Direct-to-Consumer Genetic Test Results’ (2019) 170(9) Annals of internal medicine 643

Australian Competition and Consumer Commission (2019) Digital Platforms Inquiry: Final Report

Wendy Bonython and Bruce Baer Arnold, ‘Privacy, Personhood, and Property in the Age of Genomics’ (2015) 4(3) Laws 377

Wendy Bonython and Bruce Baer Arnold, ‘Direct to consumer genetic testing and the libertarian right to test’ (2018) 44(11) Journal of Medical Ethics 787

Jasper Bovenberg, ‘Inalienably yours? The new case for an inalienable property right in human biological material: Empowerment of sample donors or a recipe for a tragic anti-commons’ (2004) 1 SCRIPT-ed 545

Kean Birch, ‘The neoliberal underpinnings of the bioeconomy: the ideological discourses and practices of economic competitiveness’ (2006) 2(3) Genomics, Society and Policy 1

Pam Carter, Graeme Laurie, and Mary Dixon-Woods, ‘The social licence for research: Why ran into trouble’ (2015) 41 Journal of Medical Ethics 404

Sheldon Cohen. ‘Psychosocial models of the role of social support in the etiology of physical disease’ (1988) 7(3) Health Psychology 269

Chris Culnane, Benjamin I. P. Rubinstein and Vanessa Teague, 'Health Data in an Open World' (2017)

Kevin Davies, The $1,000 Genome: The Revolution in DNA Sequencing and the New Era of Personalized Medicine (Simon and Schuster, 2010)

Maureen Dorney, ‘Moore v. The Regents of the University of California: Balancing the need for biotechnology innovation against the right of informed consent’ (1989) 5 High Technology Law Journal 333

Gerald Dworkin, The Theory and Practice of Autonomy (Cambridge University Press, 1988)

Khaled El Emam, Elizabeth Jonker, Luk Arbuckle, and Bradley Malin, ‘A systematic review of re-identification attacks on health data’ (2011) 6(12) PloS one e28071

James P. Evans, ‘Recreational genomics; what's in it for you?’ (2008) 10(10) Genetics in Medicine 709

Charles Foster, Human Dignity in Bioethics and Law (Bloomsbury, 2011)

Alexandra George, ‘The Difficulty of Defining ‘Property’’ (2005) 25 Oxford Journal of Legal Studies 793

and Wendy Bonython, and Bruce Baer Arnold. ‘Privacy, Personhood, and Property in the Age of Genomics’ (2015) 4(3) Laws 377

Jürgen Habermas, ‘The Concept of Human Dignity and the Realistic Utopia of Human Rights’ (2010) 44(4) Metaphilosophy 444

Shawn Harmon, ‘The significance of UNESCO’s universal declaration on the human genome and human rights’ (2005) 2 SCRIPT-ed 8

Shawn Harmon, ‘ ‘Ethical rhetoric: Genomics and the moral content of UNESCO’s ‘universal’ declarations’ (2008) 34 Journal of Medical Ethics e24

Jon Hoeksma, ‘The NHS’s scheme: What are the risks to privacy?’ (2014) 348 British Medical Journal g1547

International Human Genome Sequencing Consortium, ‘Initial sequencing and analysis of the human genome’ (2001) 409 Nature 860

Immanuel Kant, ‘Groundwork of the Metaphysics of Morals’ [Grundlegung zur Metaphysik der Sitten Metaphysik der Sitten (first published 1785)] in Mary Gregor (ed and trans), Practical Philosophy: The Cambridge Edition of the Works of Immanuel Kant (Cambridge University Press, 1996)

Rachel Kalf, Rachel Bakker, and Cecile Janssens, ‘Predictive ability of direct to consumer pharmacogenetic testing: When is lack of evidence really lack of evidence?’ (2013) 14 Pharmacogenomics 341

George Kateb, Human Dignity (Harvard University Press, 2011)

Justin Keen, Radu Calinescu, Richard Paige and John Rooksby, ‘Big data + politics = open data: The case of health care data in England’ (2013) 5(2) Policy and Internet 228

Sheldon Krimsky and Tania Simoncelli, Genetic Justice: DNA Data Banks, Criminal Investigations, and Civil Liberties (Columbia University Press, 2013)

Kazimierz Krzysztofek, ‘The algorithmic society: digitarians of the world unite’, in Paul Kidd (ed) European Visions for the Knowledge Age. A Quest for New Horizons in the Information Society (Cheshire Henbury, 2007) 57

David Lazer (ed), DNA and the Criminal Justice System: The Technology of Justice (The MIT Press, 2004)

Pekka Martikainen, Mel Bartley and Eero Lahelma. ‘Psychosocial determinants of health in social epidemiology’ (2002) 31(6) International Journal of Epidemiology 1091

Amy McGuire and Wylie Burke, ‘An unwelcome side effect of direct to consumer personal genome testing: Raiding the medical commons’ (2008) 300 Journal of the American Medical Association 2669

Megan Molteni, ‘23andMe's pharma deals have been the plan all along’ (2018) Wired

Michael Murray, ‘Why We Should Care About What You Get for ‘Only $99’ from a Personal Genomic Service’ (2014) 160 Annals of Internal Medicine 507

Liangyuan Na, Cong Yang, Chi-Cheng Lo,Fangyuan Zhao, Yoshimi Fukuoka and Anil Aswani , 'Feasibility of Reidentifying Individuals in Large National Physical Activity Data Sets From Which Protected Health Information Has Been Removed With Use of Machine Learning' (2018) 1(8) JAMA Network Open e186040

Martha Nussbaum, Frontiers of Justice: Disability, Nationality, Species Membership (Harvard University Press, 2006)

Elizabeth Pennisi, ‘Finally, the book of life and instructions for navigating it’ (2000) 288(5475) Science 2304

Ugo Perego, Ann Turner, Jayne E. Ekins, and Scott R. Woodward, ‘The science of molecular genealogy’ (2005) 93 National Genealogical Society Quarterly 245

Felix Ralph, ‘Convictions through kith and kin: Legal, policy and ethical issues in DNA familial matching and genetic metadata’ (2018) 29(3) Current Issues in Criminal Justice 243

Luc Rocher, Julien M. Hendrickx and Yves-Alexandre de Montjoye, ‘Estimating the success of re-identifications in incomplete datasets using generative models’ (2019) 10 Nature Communications 3069

Jerome Schneewind, The Invention of Autonomy: A History of Modern Moral Philosophy (Cambridge University Press, 1998)

Susan Shell, ‘Kant on Human Dignity’, in Robert Kraynak and Glenn Tinder (eds), In Defense of Human Dignity: Essays for Our Times (University of Notre Dame Press, 2003)

Rebecca Skloot, The Immortal Life of Henrietta Lacks (Crown, 2010)

Richard Spinello. ‘Property rights in genetic information’ (2004) 6 Ethics and Information Technology 29

Henri-Corto Stoeklé, Marie-France Mamzer-Bruneel, Guillaume Vogt and Christian Hervé, ‘23andMe: a new two-sided data-banking market model’ (2016) 17(1) BMC Medical Ethics 19

Bastian Greshake Tzovaras and Athina Tzovara, ‘The personal data is political’ in Jenny Krutzinna and Luciano Floridi (eds), The Ethics of Medical Data Donation (Springer, 2019) 133

Paraskevas Vezyridis and Stephen Timmons, ‘Understanding the care. data conundrum: New information flows for economic growth’ (2017) 4(1) Big Data & Society 1

Jennifer Wagner, Jill D. Cooper, Rene Sterling, and Charmaine D. Royal. ‘Tilting at windmills no longer: A data-driven discussion of DTC DNA ancestry tests’ (2012) 14 Genetics in Medicine 586

Spencer Wells, Deep Ancestry: Inside the Genographic Project (National Geographic Books, 2006)

David Winickoff and Larissa B. Neumann. ‘Towards a social contract for genomics: Property and the public in the ‘biotrust’ model’ (2005) 1 Life Sciences Society and Policy 8