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What’s Wrong with the Right to Genetic Privacy: Beyond Exceptionalism, Parochialism and Adventitious Ethics

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The Ethics of Biomedical Big Data

Part of the book series: Law, Governance and Technology Series ((LGTS,volume 29))

Abstract

Advances in full genome sequencing have led to a practical and ethical conflict between protecting genetic privacy and large-scale genomic research. This chapter concerns the value of genetic privacy, and consists of both a negative and positive claim. The negative claim is that genetic privacy is not intrinsically valuable, and that the barriers to genomic research posed by an unqualified right to genetic privacy are not justified. The positive claim is that genetic research is supported by the principle of respect for autonomy.

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Notes

  1. 1.

    The sum total of information contained within an organism’s DNA is its genome; a person’s genome is of the human genotype, but “genotype” can also refer to classes of genomes within the human genotype. The terms genomic and genetic research refer to research conducted using most or all of the information contained within the subject’s genome.

  2. 2.

    Information derived through genetic sequencing.

  3. 3.

    Although not all proponents of genetic privacy claim to be proponents of genetic exceptionalism, the two positions tend to go together, and are mutually supportive. Further, it seems plausible to assume that anyone who is a proponent of genetic privacy believes that genetic information is exceptional in some way.

  4. 4.

    The concept of rights as trumps is from Dworkin (1978).

  5. 5.

    It is worth noting that this statement is, strictly speaking, false. For example, a person’s body mass index may be a much better predictor of diabetes than any information derived from genetic code.

  6. 6.

    This definition is offered as an attempt to distinguish genetic discrimination from discrimination on the basis of traits (e.g. race) that have a genetic component.

  7. 7.

    For international laws against genetic discrimination, see Motoc (2009, 222–246).

  8. 8.

    Such rights are “special” insofar as they impose additional restrictions not already entailed by regulations for medical information generally. See, for example, Annas (1993, 1995, 1999), Annas et al. (1995), Rothstein (2005).

  9. 9.

    Specific challenges are also presented by research involving subjects who are typically viewed as not able to consent, e.g. children (Gurwitz et al. 2009) and archival samples (Steinberg et al. 1995; Beskow et al. 2001; Bathe and McGuire 2009).

  10. 10.

    There is currently a debate over whether policies of “broad consent,” where participants would agree to future unspecified use of their genetic information, is an ethically acceptable alternative. Critics argue that “There is no such thing as ‘general informed consent’” and that “it is misleading to use the notion of informed consent for participation in research that is unforeseen and has not been specified in a research protocol.” (Arnason 2004, 41; Caulfield 2007; Greely 2007). For defense and further discussion, see Hansson et al. (2006), Beskow et al. (2001), Lunshof et al. (2008).

  11. 11.

    The idea of rights as moral constraints is from Nozick (1974, sec. Moral Constraints and Moral Goals).

  12. 12.

    Information is considered “de-identified” once any uniquely identifying data is removed, e.g. name, driving license, national insurance number, etc. Information that is de-identified may or may not be re-identifiable; coding allows for de-identification during research or data-sharing, but may also allow for the re-identification of genetic information and DNA samples. Such information is considered de-identified but remains potentially identifying; information that is no longer potentially identifying (e.g. where all linkages to the individual have been permanently destroyed) is considered anonymous. See McGuire et al. (2008).

  13. 13.

    Controversy over the plausibility of maintaining anonymity first arose after the publication of Homer (2008). The report showed that information previously considered fully anonymous was, in fact, potentially identifying. The report’s findings have been contested, but prompted both the Wellcome Trust and NIH to withdraw public access to certain anonymized genetic data-sets. See also Gymrek et al. (2013).

  14. 14.

    Nevett cautions against conflating the Greek oikos with the modern notion of a “private sphere.” (Nevett 2001, 5). This view has been contested by those who believe that Aristotle did place distinctive value on the privacy afforded by family life, e.g. (Salkever 1977). However, even if Aristotle did believe the oikos represented a special sphere for family life, there is no evidence to suggest he believed individual privacy (e.g. seclusion from public life) was a value, and certainly not a value that could compete with or trump the good of the polis. Cf. Aristotle’s discussion of political science at Book I Chapter 2 of the Nicomachean Ethics (Irwin 1985, lines 1094b 9–10).

  15. 15.

    McCloskey (1980, 17–18) calls attention to this often-ignored fact and notes that neither Locke, Rousseau, Kant nor Mill discuss privacy as a moral concept.

  16. 16.

    E.g. Privacy as a source of moral obligations.

  17. 17.

    A prima facie obligation is to be distinguished from an actual or ultimate obligation. An agent may be exempt from a prima facie obligation depending upon other competing obligations. For example, the Justices note that the obligation to respect an individual’s privacy may be overruled or suspended when there is sufficient “public interest” in that individual’s affairs. See Ross and Stratton-Lake (2002).

  18. 18.

    A genetic variation is “interpreted” when correlated with a clinically significant trait.

  19. 19.

    Furthermore, some additional reason would be needed to explain the purported ethical significance between coming to know a person has blue eyes because they have shared their DNA versus seeing them on the street.

  20. 20.

    In the United States, this notion played an important role in the argument that a right to privacy prohibited state bans on abortion rights.

  21. 21.

    However, it is important to note that Locke’s conception of self-ownership is not unqualified; according to Locke, individuals are stewards over their bodies, and have obligations stating how they may or may not treat their “property.” As Ryan notes, “the starting point of an adequate interpretation of Locke’s [concept of self-ownership] begins with the general principle that human beings have only those rights in themselves or over anything else that are required to enable them to achieve the purposes for which God established the world and created them.” (Ryan 1994, 243)

  22. 22.

    For further discussion of the importance of, and transition towards, digital bio-banks, see Church et al. (2009), Kaye et al. (2009a, b), Mauron and Boggio (2005), Krawczak et al. (1999).

  23. 23.

    The limitations of a property based approach to privacy rights motivated the original articulation of the right to privacy. See Warren and Brandeis (1890).

  24. 24.

    For further discussion see Doukas and Berg (2001).

  25. 25.

    In contrast to, for example, Scanlon (1975, 316).

  26. 26.

    For a response to Thomson, see Scanlon (1975). For a more general reply, see Parent (1983b).

  27. 27.

    Cf. “To regard himself as autonomous in the sense I have in mind, a person must see himself as sovereign…” (Scanlon 1972, 215) “The autonomous man, insofar as he is autonomous, is not subject to the will of another.” (Wolff 1998, 14) “I am autonomous if I rule me, and no one else rules I.” (Feinberg 1973, 161). The term “individual autonomy” is from O’Neill (2002).

  28. 28.

    The term is from Berlin’s “Two Concepts of Liberty,” in which he writes that “liberty in this sense is simply the area within which a man can act unobstructed by others.’” Berlin claims that interference with freedom is limited to cases of coercion, which includes an intentional aspect and is distinct from cases where a person is limited by what she can or cannot do by either a lack of capacity or natural laws. The liberty associated with the individualistic conception of autonomy is arguably more expansive; as we will see, interference with individual autonomy includes even cases where others may not intend to diminish a person’s autonomy.

  29. 29.

    However, as was discussed in Sect. 2, there are a number of reasons why an analogy with private property is especially problematic in the case of genetic information.

  30. 30.

    However the ability to make inferences about a person’s future health is not unique to genetic information. High blood pressure, a positive HIV test, or even information about a person’s recreational activities all lend similar, and often more significant, insight. See Murray in Rothstein (1999).

  31. 31.

    Ursin notes that this aspect of bio-bank research makes the prominence of personal privacy concerns both misplaced and “paradoxical.” See (Ursin 269)

  32. 32.

    Warfarin, an oral anti-coagulant, is one of the most commonly prescribed drugs in the developed world; it is the second most prescribed dug in America, with over 21 million annual prescriptions. See Abrahams (2010).

  33. 33.

    It is still very possible that genetic privacy and autonomy are consequentially or contingently related, for example if disclosure of genetic information leads to genetic discrimination.

  34. 34.

    I am indebted to Larry McGrath for this turn of phrase.

  35. 35.

    For general criticism of the putative connection between informed consent and autonomy, see Manson and O’Neill (2007, Chap. Consent: Nuremberg, Helsinki and beyond).

  36. 36.

    A number of alternatives to obtaining informed consent from such populations have been proposed. For a discussion of consent and children, see Brock and Buchanan (1990, Chap. 5: Minors).

  37. 37.

    Genetic screening programs are under increasing attack from genetic privacy groups in the USA. See Roser (2009).

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The author would like to thank Julian Savulescu and Roger Crisp for their supervision during the drafting of this chapter.

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  1. Oxford Internet Institute, St. Cross College, University of Oxford, 61 St Giles’, Oxford, OX1 3LZ, UK

    Bryce Goodman

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  1. Bryce Goodman
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Correspondence to Bryce Goodman .

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  1. Oxford Internet Institute, University of Oxford, Oxford, United Kingdom

    Brent Daniel Mittelstadt

  2. Oxford Internet Institute, University of Oxford, Oxford, United Kingdom

    Luciano Floridi

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Goodman, B. (2016). What’s Wrong with the Right to Genetic Privacy: Beyond Exceptionalism, Parochialism and Adventitious Ethics. In: Mittelstadt, B., Floridi, L. (eds) The Ethics of Biomedical Big Data. Law, Governance and Technology Series, vol 29. Springer, Cham. https://doi.org/10.1007/978-3-319-33525-4_7

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