Abstract
According to US law, insurance companies can lawfully differentiate individual health insurance premiums on the basis of non-genetic medical information, but not on the basis of genetic information. The article reviews the case for such genetic exceptionalism. First, I critically assess some standard justifications. Next, I scrutinize an argument appealing to the view that genetically based premium differentiation expresses that persons do not all merit equal concern and respect. In the final section, I argue that even if genetic exceptionalism is unjustified, there is a forceful luck egalitarian argument against basing premiums on genetic risks, to wit, that this tends to make some individuals worse off than others as a result of the bad brute luck involved in having a genetically determined, above-average risk of developing health problems.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
Notes
http://www.genome.gov/24519851. For a summary of the legal status of genetic discrimination elsewhere, see Joly et al. (2013, p. 11).
Most Americans obtain health coverage through employment-based group health insurance, which is regulated by The Health Insurance Portability and Accountability Act (Rothstein 2005, p. 28). Also, as Ronen Avraham pointed out to me, Obama-care from 2010 softens the genetic exceptionalism of GINA by prohibiting insurers from taking pre- as well as post-disease information into account.
‘The statute defines ‘genetic test’ as an analysis of human DNA, RNA, chromosomes, proteins, or metabolites that detects genotypes, mutations, or chromosomal changes’, http://www.genome.gov/24519851. In the quoted passage, ‘information’ is preceded by ‘probabilistic’. I omit this qualification from the definition offered in Greely (2001). Insofar as there is a distinction between probabilistic and non-probabilistic information about genes, either category qualifies as genetic information. Of course, information about future diseases based on genetic information is always probabilistic, but this is a different matter. I am indebted to a referee at this point.
This article focuses on health insurance and premium differentiation, but its main arguments apply to other kinds of insurance, e.g., employment insurance, as well as to eligibility conditions.
This question does not arise in relation to welfare-state, solidaristic insurance schemes where ‘the price of the insurance is not related to the level of known risk brought to the pool, and the… level of cover is not chosen by the individual insuree’ (O’Neill 2006, p. 569; Rothstein 2005, p. 28). My focus is on mutual insurance schemes such as those existing in the US context.
For an influential, early critique of genetic exceptionalism, see (Holm 1999).
For a useful account, see Stemplowska and Swift (2012). I assume that, under ideal circumstances, among other things: (1) people do not knowingly violate moral requirements; (2) people do not harbor false and irrational beliefs; (3) and various practical limitations, for instance, certain kinds of information deficits, are non-existent. However, I offer no precise distinction between ideal and non-ideal circumstances, but rely on reasonably uncontroversial intuitions regarding this matter.
The fact that insurers do not have access to all of the information on the basis of which such expectations are formed creates a problem of adverse selection.
There is a sense in which any differential insurance premiums involve charging some people more on the basis of something that is beyond their control, i.e., the risk profile of members of their reference class. However, because the present objection is supposed to apply only to differentiation of premiums on the basis of genetic information, this is not the sense at stake here.
Hellman offers various non-equivalent formulations of the first condition. Here, I focus on the most promising one (see Lippert-Rasmussen 2013, pp. 133–134).
One can, e.g., be a carrier of one copy of a genetic variation that, when present in two copies, produces a health problem (e.g., cystic fibrosis) without that genetic variation being expressed in one’s having a health problem. Indeed, geneticists believe that a great deal of people, if not all, without health problems have some ‘bad genes’ (Capron 1990, p. 690). It is unclear how that affects the expressive meaning of genetic discrimination that people, under the ideal epistemic condition that Hellman thinks determines the objectivity of claims about expressive meaning, would ascribe to the practice (Hellman 2008, p. 76; see also Hellman 2000, p. 23). It seems odd that the relevant ideal conditions do not involve relevant scientific knowledge. Yet, in her ruminations on the expressive meaning of genetic discrimination, Hellman never refers to such knowledge.
For instance, (3*) ‘If an act is wrong, then the state ought to forbid it absent special circumstances’. Adding the premise that no special circumstances obtain in the case of genetic discrimination suffices for the argument to entail (4).
It seems that an equally plausible argument could be made in relation to, say, measures taken to combat obesity. If so, Asch’s concern does not support genetic exceptionalism.
Some might deny that the practice of prenatal detection and abortion of fetuses with a high probability of developing disabilities harms already existing disabled people. However, this does not undermine the present argument. This argument relies on the conjecture that the force of Asch’s example derives form the harm to disabled people that Asch and Hellman clearly think is involved in prenatal detection and ensuing abortion of fetuses with a high probability of developing disabilities. Hence, I conjecture that people who are attracted to the present objection will fail to be moved by Asch’s example. I thank an anonymous referee for raising the point to which I respond here.
Hellman accepts that there might be other ways of offending against ‘the equal moral worth of persons’ than through acts that express a denial of the equal moral worth of persons (Hellman 2008, p. 31). Hence, she might agree that the former scenario offends the principle of equal moral worth. But conceding this implies that one cannot identify wrongful discrimination on the basis of which kinds of differential treatment are demeaning (Hellman 2008, p. 29), because it implies that differential treatment may offend against the principle of equal moral worth, even if it is not demeaning.
Perhaps this just shows that IVF treatment never had any objectionable meaning. I set aside this issue because it is hard to tackle in the absence of a precise specification of the relevant ideal conditions, which Hellman thinks secures the objectivity of interpretations of social meaning. I assume, however, that the objectivity in question is compatible with deliberate changes of meaning.
Because the feature of luck egalitarianism, which is crucial to my argument below, is its distinction between choice and bad luck, my argument can be combined with distributive principles other than equality, e.g., the priority principle or sufficientarianism.
Recall my response to the third defense of genetic exceptionalism in “Preliminaries” section.
I also set aside the implication of some luck egalitarian accounts, e.g., Dworkin’s according to which people should bear the costs of their own choices, to wit, that not differentiating insurance premiums on the basis of medical information might be unjust when this information reflects factors under the insurer’s control.
References
Adler, Matthew. 2000. Expressive theories of law: A skeptical overview. University of Pennsylvania Law Review 148: 1363–1501.
Alexander, Larry. 2003. The legal enforcement of morality. In Companion to applied ethics, ed. Raymond G. Frey, and Christopher Welllman, 128–141. Oxford: Blackwell.
Andrews, Lori B. 1997. Past as prologue: Sobering thoughts on genetic enthusiasm. Seton Hall Law Review 27: 893–918.
Asch, Adrienne. 2000. Why I haven’t changed my mind about prenatal diagnosis: Reflections and refinements. In Prenatal testing and disability rights, ed. Erik Parens, and Adrienne Asch, 234–258. Washington DC: Georgetown University Press.
Brest, Paul. 1976. In defense of the antidiscrimination principle. Harvard Law Review 90: 1–55.
Capron, Alexander M. 1990. Which ills to bear? Reevaluating the ‘threat’ of modern genetics. Emory law Review 39: 665–696.
Cohen, Gerald A. 2006. Reply to Hurley. Philosophy and Phenomenological Research 72: 439–446.
Diver, Colin S., and Jane Maslow Cohen. 2001. Genophobia: What is wrong with genetic discrimination? University of Pennsylvania Law Review 149: 1439–1482.
Dworkin, Ronald. 2000. Sovereign virtue. Cambridge, MA: Harvard University Press.
Gostin, Larry. 1991. Genetic discrimination: The use of genetically based diagnostic and prognostic tests by employers and insurers. American Journal of Law and Medicine 17: 109–144.
Greely, Henry T. 2001. Genotype discrimination: The complex case for some legislative protection. University of Pennsylvania Law Review 149: 1483–1505.
Hellman, Deborah. 2000. The expressive dimension of equal protection. Minnesota Law Review 85: 1–70.
Hellman, Deborah. 2003. What makes genetic discrimination exceptional? American Journal of Law and Medicine 29: 77–116.
Hellman, Deborah. 2008. When is discrimination wrong?. Cambridge, MA: Harvard University Press.
Holm, Søren. 1999. There is nothing special about genetic information. In Genetic information: Acquisition, access, and control, ed. Ruth F. Chadwick, and Allison K. Thomson. New York: Kluwer/Plenum.
Joly, Yann, Ida Ngueng Fese, and Jacques Simard. 2013. Genetic discrimination and life insurance. A systematic review of the evidence. BMC Medicine 11(25): 1–15.
Lemke, Thomas. 2005. Beyond genetic discrimination. Genomics, Society and Politics 1: 22–40.
Lippert-Rasmussen, Kasper. 2001. Equality, option luck, and responsibility. Ethics 111: 548–579.
Lippert-Rasmussen, Kasper. 2013. Born free and equal?. New York: Oxford University Press.
Lippert-Rasmussen, Kasper. 2015. Luck egalitarianism. London: Bloomsbury Publishing.
Malpas, Phillipa J. 2008. Is genetic information relevantly different from any other kinds of non-genetic information in the life insurance context? Journal of Medical Ethics 34: 548–551.
Moreau, Sophia. 2010. What is discrimination? Philosophy & Public Affairs 38: 143–179.
National Partnership for Women and Families. 2004. Faces of genetic discrimination.
Norheim, Ole, and Alexander Cappelen. 2005. Responsibility in health care: A liberal egalitarian approach. Journal of Medical Ethics 31: 476–480.
O’Neill, Martin. 2006. Genetic information, life insurance, and social justice. The Monist 89: 567–592.
Rothstein, Mark A. 2005. Genetic exceptionalism and legislative pragmatism. Hastings Center Report 35: 27–33.
Stemplowska, Zofia, and Adam Swift. 2012. Ideal and nonideal theory. In The Oxford handbook of political philosophy, ed. David Estlund, 373–389. New York: Oxford University Press.
Vallentyne, Peter. 2002. Brute luck, option luck, and equality of initial outcomes. Ethics 112: 529–557.
Zimmern, Ron L. 1999. Genetic testing: A conceptual exploration. Journal of Medical Ethics 25: 151–156.
Acknowledgments
I am grateful to Ronen Avraham, Sune Lægaard, Thomas Søbirk Petersen, Jesper Ryberg, Frej Klem Thomsen, and an anonymous referee for helpful comments.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Lippert-Rasmussen, K. Genetic Discrimination and Health Insurance. Res Publica 21, 185–199 (2015). https://doi.org/10.1007/s11158-015-9271-4
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11158-015-9271-4