Shifting social norms: Genetic privacy and the spillover effect

Date09 December 2009
DOIhttps://doi.org/10.1108/S1059-4337(2009)0000050006
Pages65-104
Published date09 December 2009
AuthorRobin Pierce
SHIFTING SOCIAL NORMS:
GENETIC PRIVACY AND
THE SPILLOVER EFFECT
Robin Pierce
ABSTRACT
Potentially major shifts in privacy norms are taking place as a result of
advances in genetic technologies. This chapter identifies a spillover effect
in the form of the inadvertent emergence of new norms and introduces an
original typology developed in response to these new norms regarding
privacy. It focuses on the emerging practice of compelling access to
genetic information of biologically related persons to gain information
about a particular individual. This chapter highlights the recent practice
in child lead paint poisoning cases in which defendants seek to discover
medical and I.Q. records of biologically related non-parties to establish
alternate genetic causation of low I.Q. It concludes that greater attention
should be given to the spillover effect and the emergence of shadow norms.
Craniometry was not just a plaything of academicians, a subject confined to technical
journals. Conclusions flooded the popular press. Once entrenched, they often embarked
on a life of their own, endlessly copied from secondary source to secondary source,
refractory to disproof because no one examined the fragility of primary documentation.
– Steven Jay Gould
Studies in Law, Politics, and Society, Volume 50, 65–104
Copyright r2009 by Emerald Group Publishing Limited
All rights of reproduction in any form reserved
ISSN: 1059-4337/doi:10.1108/S1059-4337(2009)0000050006
65
1. INTRODUCTION
Any significant change in human attitudes and behavior usually brings subtle,
often unanticipated side effects. With the advances in genetic science, much
attention has been devoted to the importance of shared genetic information
among biologically related individuals. Attendant to this, we are becoming
accustomed to the notion that individual genetic information may be
beneficially significant for others (Clarke et al., 2005). In fact, as we become
accustomed tosharing this information, weare also altering privacy norms. In
the case of genetic privacy, there has been a recent shift in norms that is
creating its own range of side effects. This shift acknowledges, accepts, and
adapts behavior to the concept of a new biologic entity for which identity and
interests extend beyond the individual to include varying spheres of persons
with whom an individualshares common genetic data is also creating its range
of side effects. Many of these anticipated side effects have been discussed in
the literature, including the disclosure of genetic test results to relatives (Suter,
1993), research on socially identifiable groups and the rights and burdens of
being a non-participant member of that group (Hallowell, Ardern-Jones,
Eeles, Foster, Lucassen, Moynihan & Watson, 2005), and family rights and
interests in genetic research on the proband (Murrelle & McCarthy, 2001).
The creation and acceptance of these emerging spheres of biologic identity
demand careful attention to the interests, obligations, and rights of persons
included in an individual’s contextually referenced biologic sphere. Side
effects can be seen in the gradual emergence of new norms regarding the
sharing of biological information for the purposes of research, for example,
disease investigation (Whitworth, 2006), therapeutic intervention (Offit,
Groeger, Turner, Wadsworth, & Weiser, 2004), or contribution to general
knowledge (Cavalli-Sforza, 1997), all of which claim to benefit society.
However, there is a shadow side to this shift that implicitly recognizes a less
individualistic sense of identity. While researchers and society are eager to
gain the benefits that may be derived from the increased sharing of
biological and, specifically, genetic information, we must also be attentive to
spillover norms that share the origins of the beneficial norm but develop to
function in ways contrary to the best interests of society.
Indeed, once we as a society accept the existence of a less individualistic
notion of identity, many other shifts are immediately occasioned unless
specifically addressed in some manner – either by an affirmative decision to
employ a particular policy or by an affirmative decision not to adopt a
specific policy. Recognizinga shared interest in a family member’s genetic test
results requires that we identify what, if any, rights and obligations should be
ROBIN PIERCE66
accorded that interest (Pierce, 2007). Findings derived from research on
believed genetic traits in families then require that we identify what, if any,
parameters we use to define individual attributes, identity, and rights.
Moreover, if we accept that family members should be accorded rights or
privileges regarding a proband’s genetic information, then we must consider
the mirror concept (inverse use of the same terms) of this expanded reach
based on shared geneticdata and implicit shared interest. This mirror concept
would suggest that once this beneficial relationship and obligation to share
common information is accepted, then we must also accept the burdens
attendant to the existence and use of common genetic information that are of
a negative type. For not only must we then bind a biologic relative to the
genetic status of the proband, we must tie biologically related relatives
eternally to making available genetic information whenever the proband
places it in issue. Thus, when a plaintiff alleges that she has suffered a
compensable injury as a result of defendant’s negligent actions, a defendant
may seek to prove that the plaintiff’s injuries were genetically caused rather
than caused by the defendant’s actions and, moreover, gain access to private
medical and other records of a non-party relative in order to prove it. This
forces the question of whether we should recognize a mirror obligation that
would allow a defendant to legally compel access to genetic information of
the plaintiff’s family to show that the injury has a hereditary source rather
than a source in the defendant’s behavior.
1
Some courts presiding over lead
paint cases think so (Salkey v. Mott,1997;Anderson v Seigel, 1998).
This consequence is more than just a side effect of a new norm. The
inadvertent emergence of the mirror concept that logically follows from
adoption of a norm that recognizes the obligation to share genetic
information between a proband and biologically related persons results in
a situation in which a proband, by his or her actions, necessarily implicates
those to whom he or she is related regardless of the context. Without specific
privacy protections setting limits, the actions of any given individual
compromises the privacy of those related to him. Thus, the mirror reflection
of the emerging norm in the genetic biomedical context casts a shadow that
would obligate relatives to each other, even to detriment. While I argue that
this sharing of genetic information among individuals is the appropriate
domain of social norms and not of legislation, this chapter also raises the
question of whether this should also be the case with its shadow norm. This
chapter explores why an answer in the affirmative preserves privacy rights
and ultimately serves to protect the most vulnerable members of society.
To illustrate this point, I briefly consider the example of the emerging
trend of assertion of the defense in lead paint actions alleging that the low
Shifting Social Norms: Genetic Privacy and the Spillover Effect 67

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