Relational Autonomy and the Right Not to Know Debate
Dorit Barlevy
Erasmus Mundus Applied Ethics Thesis
Spring 2010
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TABLE OF CONTENTS
CHAPTER 1 – Introduction
3
CHAPTER 2 – The Principle of Autonomy and an Ethic of Care Approach
8
2.1 Autonomy
9
2.2 Care Ethics in Brief
13
CHAPTER 3 – A Review of Literature Dealing with the Right Not to Know Debate 15
3.1 Ost and Strasser
16
3.2 Chadwick
20
3.3 Andorno
25
CHAPTER 4 – An Element Not Adequately Addressed
29
4.1 Stigma
31
CHAPTER 5 – Relational Autonomy and Its Application to the Debate
38
5.1 Shallow Versus Deep Conceptions of Relational Autonomy
41
CHAPTER 6 – Conclusion
47
6.1 Further Applications
50
REFERENCES
52
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Introduction
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There seems to be philosophical consensus that knowledge is inherently good in and of
itself (Chadwick, Levin & Schickle, p 3). If knowledge is such a “good” thing, then it is
understandable for persons to desire having it. Thus our modern world is shaped by the
generation and acquisition of ever-increasing amounts of information.
But is knowledge always a “good” thing? After all, there are differences between good
news and bad news. Furthermore, there are the well-known expressions of “no news is
good news” and “ignorance is bliss.” So instead of perceiving knowledge to be a “good”
thing, it should really be viewed as morally neutral and that the attitude one adopts
towards that knowledge to be socially conditioned (Chadwick, p 18). Additionally,
knowledge is not merely an ends, but can be a means to other things. Knowledge can
most definitely be understood as empowering individuals. With the assistance of
knowledge, one can avoid making decisions that lead to bad outcomes and instead choose
those options that will more likely result in positive outcomes (ibid). Certainly it would
seem that a reasonable person would want to know all relevant facts before making any
decision. However such a line of reasoning does not account for the harm that
knowledge can cause – such as psychological distress and/or misery – or the costs
involved in the acquisition of knowledge (Strasser, p 268) – such as time to find out
information, psychological distress due to receipt of information, or a conferred
responsibility to impart such information to others. Therefore, one could reasonably
decline to acquire certain information in order to prevent such harm and personal costs.
Furthermore, despite the moral neutrality of knowledge, moral concerns can arise
regarding the use of acquired knowledge, such as with the case of research involving
radioactivity and the eventual application of that knowledge to create the atomic bomb
(Shickle, p 72). Moral concerns also arise due to the fact that the acquisition of
knowledge can confer a certain level of responsibility – possibly a moral responsibility to
put that knowledge to good use. Could someone rightfully claim that the burden of
acquiring a certain piece of knowledge carries too much of a responsibility for him/her
and thus should be able to claim a right to remain ignorant?
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In an era of greater patient autonomy and empowerment, the right not to know is often
applied to cases of genetic testing whereby a patient is not required to perform a genetic
test (see WMA Statement on Genetics and Medicine). This right arises due to a number
of reasons including consideration of the impact such information revealed through
genetic tests has on the individual patient and the very real threat of discrimination by
health insurance companies. Additionally, the results of a genetic test have health
implications for a limited scope of persons – primarily the individual patient requesting
the test, blood-relatives and any of his/her offspring. Genetic diseases, therefore, are not
as communicable (and hence less “dangerous”) as infectious (air or blood-borne)
diseases.
Much debate exists over whether such a right not to know does in fact exist and most
commonly the debate revolves around the interpretation of principles of autonomy. In
reviewing the literature thus written on this subject, I noticed that discussion is focused
on a classical definition of autonomy (which I will shortly elaborate upon). However,
absent from the literature is discussion of relational autonomy and how it can be
applicable to the right not to know debate. It is interesting that this particular approach to
autonomy is not discussed with respect to the debate because genetic information is
“relational” by its very nature – in that it is applicable to all those that share the same
genes (i.e. blood relatives). Therefore, it is with this thesis that I wish to investigate
whether the principle of relational autonomy can enhance and contribute to the right not
to know debate. For purposes of brevity, I shall mainly focus on relational autonomy
with respect to genetic testing, especially due to its inherent “relationality.”
I defend the stance that a right not to know can exist when in the third chapter I review
the most well-known arguments involved in the right not to know debate, beginning with
the discourse between David Ost and Mark Strasser. Ost argues that the right not to
know cannot exist based on theories of autonomy, because in order to be autonomous one
must be rational and the adamant request to remain ignorant is in and of itself irrational.
Meanwhile, Strasser focuses on the harm principle and the probability rather than
certainty of harm that would result in not knowing information. Ruth Chadwick’s
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writings claim a right not to know can be founded on principles of autonomy and selfdetermination. She also briefly discusses others’ right to know another’s genetic
information. Finally, Roberto Andorno writes in support of the right not to know, based
on principles of autonomy, but contends that because the right is neither absolute nor
implicit then it must be explicitly “activated.”
For the fourth chapter I draw attention to a concept which I feel does not get adequately
addressed in the right not to know debate, namely that of stigmatization. I expound upon
the components of stigma and their related implications based upon the specific writings
and definitions of Bruce Link and Jo Phelan which I believe convincingly portray the
realities of this often latent phenomenon. Understood within a framework of relational
autonomy, fear of this phenomenon can often subconsciously influence an individual
towards choosing to not know certain information.
In chapter five I present my idea of how the relational approach to autonomy can provide
additional insight to the right not to know debate. It is in this chapter that I go into depth
on the relational approach to autonomy, sprinkling the discussion with a care of ethics
perspective. Furthermore, I present my theorized concepts of shallow and deep relational
autonomy and determine whether such a theory enriches elements of the debate. (My
hope is that the reader will be able to follow my train of thought in tackling this issue where I at first conceive of these two conceptions of relational autonomy and then realize
that they do not apply so easily and therefore tweak them, by placing them on ends of a
continuum, in order to create a more apt theory. I should note that with this theory I am
not attempting to make any ground-shattering revelations, but rather to explore ways of
looking at the debate that I believe have not yet been tried, especially in an effort to
incorporate what I believe to be a latent yet highly influential social phenomenon that
affects individuals’ decision making processes.)
And in the sixth and final chapter I summarize the findings and discuss possible further
applications of the right not to know. Specifically, I take a look at various diagnostic
tests, such as those which determine the status of communicable diseases. Such a
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discussion goes further than previous discussions in the thesis that will have thus far been
limited to genetic testing.
But before I delve into the right not to know debate, I wish to take a moment to elaborate
a bit on the concept of autonomy, especially owing to the fact that so much of the debate
regarding the right not to know revolves around it. Additionally, in the next chapter I
expound upon an ethics of care approach, which gives theoretical support to the concept
of relational autonomy. I intend to use both the concepts of relational autonomy and its
supporting ethics of care approach when tackling the right not to know debate in my own
way.
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The Principle of Autonomy and an Ethic of Care Approach
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2.1 AUTONOMY
The definition of autonomy is literally “self rule” and as the prominent philosopher
Onora O’Neill highlights, “[m]ost contemporary accounts of autonomy see it as a form of
independence” (O’Neil, p 28) from something or other. It is important to not mistakenly
equate autonomy with the mere ability to choose. The classical interpretation of
autonomy views it generally as a capacity or trait that individuals may have to varying
degrees, which s/he can exhibit by acting in individualistic and rationalistic ways. The
focus of this interpretation is on freedom of will and rationality. Thus, one can only be
fully autonomous when s/he acts independent of any and all outside influences in a right
and appropriate way, as deemed (reasonable) by society.
Such a common view of autonomy is far too simplistic to note the slight and varied
innuendos concerned with such a broad concept as autonomy. For a more detailed
analysis I now turn to the ideas proposed by the American social and political
philosopher Joel Feinberg who suggests there are four specific ways that the term
“autonomy” can be used (see Maartje Schermer’s The Different Faces of Autonomy).
First of all, the term can refer to the capacity for self-government. This capacity is a
matter of degree depending upon one’s ability to make rational choices. As an actual
condition, “autonomy” refers to the possession and practice of certain virtues that
generate the idea of self-government. In this sense, “autonomy” is not a characteristic of
specific actions or choices, but rather a global property of persons. One could group
these first two uses of the term “autonomy” into what are known as authenticity models
of autonomy. Such models suggest that in order for a person to be autonomous s/he must
“really be him/herself.” As we will shortly see, these models contend that one must
either become truly self-aware (i.e. by subjecting one’s actions to critical self-reflection)
or develop a “real” identity and act in accordance to that identity. Of course, one large
problem with such models is that some can abusively claim that because someone does
not act authentically or in accordance with his/her supposed own true self, then it is
preferable or even necessary to interfere with his/her actions (in order to correct a
person’s adherence to his/her true self).
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Another usage of the term “autonomy” is as a character ideal, referring to a set of virtues
that determine the actual condition of autonomy. The particular virtues should culminate
in the identity of an authentic individual who, as a member of a community, is ideally
capable of making sovereign decisions. Finally, when the term “autonomy” is used as a
right to sovereign authority it refers to the right for one to make and act upon one’s own
choices without interference by others.
In her dissertation, The Different Faces of Autonomy, Maartje Schermer suggests that
Feinberg might have missed another use of “autonomy” whereby it could refer to a right
not to be treated as if one did not have any actual autonomy. In other words, she claims
that the term “autonomy” could also refer to a right to respect. Unfortunately, while she
does not further elaborate on this supposition, one could assume that she means
autonomy can be seen as an inherent characteristic of persons that qualifies them to have
moral worth and thereby respect as an individual of a community.
Now in relation to the use of “autonomy” as an actual condition, Ronald Dworkin and
Harry Frankfurt developed a “split-level self” theory of autonomy. This theory dictates
that persons can have desires on two distinct levels: lower-order and higher-order desires.
The former refers to desires to do something (i.e. actions), whereas the latter pertains to
the desire to have certain lower-order desires. According to Dworkin’s theory, autonomy
is only achieved when a person’s higher-order desires are congruent with his/her lowerorder desires and that one’s process of identification remains independent from
subverting influences such as manipulation or coercion. It is worthy to mention, as
Schermer does, that Dworkin developed his theory at a time when behaviorist psychology
was at its peak of popularity and thus wanted to explain why certain techniques for
behavior control, such as hypnosis, conditioning and subliminal suggestion, could
actually undermine autonomy. “As he phrases it, autonomy is the capacity to reflect
critically upon one’s motivational structure and to make changes in that structure”
(Schermer, p 22). In this way, Feinberg’s distinction between autonomy as an actual
condition versus a capacity (specifically for critical self-reflection) becomes blurred. But
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then again, both of these two uses of the term autonomy can be combined into the group
of authenticity models of autonomy.
Regardless, Dworkin’s revised theory continues that autonomy can only be assessed over
a period of time. The reason for this specification is due to the obvious fact that one’s
preferences or choices can change over time, especially due to maturity, experience and
reflection. Consistent with this theory is John Christman’s “historical” account of
autonomy whereby one should focus on how a person comes to have the desires or
preferences that s/he now holds. Going further than Dworkin in elaborating on the
criteria for self-reflection, Christman claims that such a thought process must involve no
self-deception and be minimally rational. It seems that Christman specifically
emphasizes this criteria in order to align autonomous decision making with one’s “gut”
feeling, or intuition, thereby bypassing the need for rational thought processes, which
could betray one’s deeply held true feelings. This of course seems to directly contradict
Feinberg’s outline of the use of “autonomy” as a capacity, which fundamentally depends
on the degree to one’s competence – as in the ability to make rational choices. Therefore
there seems to be a bit of disagreement in the philosophical discourse as to whether the
principle of autonomy requires rationality or not. (In the next chapter, with the discourse
between Ost and Strasser, we will see further disagreement as to whether rationality is
fundamental to the specific right not to know debate.)
Anyhow, in returning to Schermer’s comprehensive literature review, she notes that
unlike the aforementioned authors, George Agich subscribes to a theory of autonomy that
highlights its dynamic character. Agich postulates that “autonomous or authentic choices
and actions are those that spring from and are consistent with a person’s developed
identity” (Schermer, p 23). While he acknowledges that critical self-reflection is
important, it is not necessary for every action in order for a person to be considered
autonomous. Instead, Agrich and others that subscribe to a developmental perspective on
autonomy stress the necessity for consistency between actions and one’s own identity. In
other words, autonomy is a process rather than a condition whereby one must have a
developed identity and s/he acts in accordance with that identity.
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While all these various classifications can be made in order to differentiate the various
uses and inuendos of the term “autonomy,” one should equally bear in mind that it is a
composite notion. As exhibited in the previous brief analysis of the concept of
autonomy, sometimes the differentiations conflict with one another. However, as a
composite notion, all these separate definitions need not be exclusionary. Instead, they
may be complementary to one another or even overlapping, especially due to the blurring
lines of distinction that the various categories possess.
Thus far, the discussions of autonomy have focused mainly on the individual and his/her
specific preferences. Granted, some of the literature review thus far has contemplated
and highlighted the importance of the process by which one comes to have his/her
specific preferences. However, such literature has focused on the individual processes at
work in the selection of one’s preferences, such as with self critical reflection. In
contrast, a more contemporary relational approach to autonomy focuses on how
individuals are embedded within complex webs of social and cultural relationships and
how these relations affect one’s identity and choices. The relational approach to
autonomy finds fault with the classical ideal of the autonomous individual as being so
atomistic and self-sufficient that any external values, social practices, relationship and/or
communities are conceived as threatening or compromising one’s autonomy (Mackenzie
& Stoljar, p 6). Instead, relational autonomy comprehends an individual’s identity and
decisions as interdependent with his/her social environment. Examining autonomy from
a relational standpoint offers two main types of conceptions: the constitutively or
intrinsically relational conception focuses on the social constitution of the agent or the
social nature of the capacity of autonomy itself, while the causally relational conception
focuses on the ways in which socialization and social relationships impede or enhance
autonomy (Mackenzie & Stoljar, p 22).
Hence, by taking a casually relational approach to autonomy, which acknowledges that
socio-cultural factors can either rightfully or wrongfully influence one’s autonomy, I
wish to take a comprehensive look at the power and role that social stigma can play on
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one’s personal choices. At this point however, I will now turn to a brief overview of the
care perspective which coheres with a relational account of autonomy (Verkerk, p 289). I
should note that I plan on using both a relational autonomy approach and its supportive
ethic of care perspective later on when examining the right not to know debate in further
detail.
2.2 CARE ETHICS IN BRIEF
An ethic of care “treats care as central for understanding the nature of morality”
(Timmons, 224). When one cares for another, ideally they would care about the
individual. Caring about someone often times entails metaphorically placing oneself in
the shoes of the individual for which s/he cares about. In this way, the ethic of care
approach emphasizes empathy and I believe that it is this capacity which makes us
uniquely human. Furthermore, we could all stand to be more empathetic, especially
when we want to better understand others, which I believe is an endeavor of societies that
strive for peaceful and harmonious relations.
Care ethics’ emphasis on empathy corresponds to an emphasis on moral responsibility
owed towards others. Therefore, like relational autonomy, which views moral questions
in terms of responsibilities rather than rights due to its focus on interdependence, care
ethics also places considerable emphasis on one’s responsibilities for others. This leads
to care ethics’ inclination towards concern about considerable harm, in contrast to
liberals’ stress of honoring individuals’ rights regardless of the damage that can be
inflicted upon others (i.e. their psychological well-being).
Now as Timmons suggests, care ethics can be understood as embracive of a virtue
pluralism, whereby it underscores the importance of connection and attachment. This
perspective views the “good life” as having relationships with others – friends, family
and community. It is also in this way that care ethics corresponds to a relational
approach to autonomy whereby the idea of human interdependency is so central. Owing
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to this correspondence, I intend to incorporate this perspective when analyzing the right
not to know debate, particularly when dealing with issues of stigma.
Due to the crucial and basic role it gives to feeling, care ethics can also be understood as
a form of sentimentalism (Slote, p 106). Having said that, one might ask if the
perspective is irrational by its very definition, seeing as feelings can be thought of in stark
contrast to the impartiality of logic. However, while some feelings can be classified as
irrational, they are not definitively so. Furthermore, feelings can be subject to various
tests to determine whether they are rational and valid especially when a moral perspective
is based upon them. I mention this issue because, as we will see in the next chapter,
rationality is understood as a central component of autonomy, which in turn forms the
basis of many arguments in favor of a right not to know.
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A Review of Literature Dealing with the Right Not to Know Debate
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For the purposes of familiarizing the reader with the concepts and issues that are most
often linked to discussions about the right not to know and to support the notion that a
right not to know can exist I shall now review some key pieces of literature that have thus
far been written on the subject. Consequently the reader will find it evident, as I
continually note throughout, that one particular yet common social phenomenon, namely
stigmatization, is either neglected or not adequately addressed in such writings. Hence in
subsequent chapters I take a closer look at the phenomenon itself, its implications and
propose approaching the issue with a principle of relational autonomy that sufficiently
deals with the dilemma of stigma.
I begin this chapter by looking at one of the first published philosophical debates on the
topic of the right not to know. Ost, who argues against a right not to know, attacks the
stance that such a right can be supported by a principle of autonomy, understood as a
capacity or actual condition that necessitates rationality. In contrast, Strasser supports a
right not to know based on the harm principle. From this discussion I turn to the writings
of Chadwick – one of the more renowned writers on the topic of a right not to know,
especially with regard to genetic testing. While her leanings are in support of a right not
to know, based upon principles of autonomy and self-determination, she recognizes the
conflict that exists between individual rights and individual responsibility. I conclude the
chapter with the more contemporary writings of Andorno, who acknowledges a right not
to know, but specifies its limits. Andorno augments the debate by stipulating that the
right not to know must be explicitly “activated” by an individual who wishes to not know
information.
3.1 OST AND STRASSER
David Ost argues that a right not to know cannot exist by connecting the debate of the
right to know versus a right not to know information to the concept of autonomy and its
relation to rationality. Ost begins by building his argument around Thomas Aquinas’
assertion that the concept of autonomy is founded on the ideas of rationality and freedom
of will. According to Aquinas’ formula, one is autonomous if and only if s/he is rational
and free of will. Therefore if one is irrational or constrained, i.e. not free of will, s/he
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cannot be autonomous. Of course constraint can be either external or internal. External
constraints can come in the form of government laws that prevent people from
committing certain actions. On the other hand, internal constraints such as personal
feelings of guilt or responsibility towards others can also prevent people from acting in
certain ways. Ost specifies that libertarians emphasize the importance of liberty by
focusing on defining autonomy as being free from external constraints. On the other
hand, others, like Kant, emphasize the need to be free from internal constraint. This
camp contends that the process by which one frees oneself from internal constraint – i.e.
via critical self-reflection – can even assist an individual in increasing his/her rational
reasoning. Both libertarian and Kantian interpretations of autonomy suggest that
physicians cannot impose unwanted information on a patient. While Ost notes this
implication he also quickly marginalizes it in order to focus on the apparent irrationality
of an individual who refuses information. As he theorizes, if the refusal of information is
irrational, then it cannot be an autonomous choice because the main element necessary
for the capacity or condition of autonomy is missing (i.e. rationality) and hence the
individual’s autonomy is not being violated when one acts against his/her expressed
desire not to be informed. Ost comes to comprehend that an individual who insistently
refuses to be informed of information, which others (i.e. rational persons) might find to
be relevant or even beneficial to the individual, does so on the basis of one of only two
possible grounds, both of which are irrational. The first possible interpretation is that the
individual’s intentions are so fixed and unalterable that they act in an obsessive manner
and hence may be classified as irrational. Ost’s second formulated interpretation is that
the individual may claim to know what he cannot know prior to another’s disclosure of
information, but claiming to know what one cannot know is contradictory and therefore
irrational.
Furthermore, Ost suggests that patients have an obligation to be informed due to their
autonomous agency. Ost specifically views autonomy as an inalienable status rather than
a right. If rationality is a necessary component of autonomy, then acting irrationally
whereby one refuses receiving (relevant) information is a violation of autonomy.
Therefore, Ost deduces that as autonomous agents, individuals must be informed.
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However, he continues by claiming that physicians shouldn’t necessarily bully their
patients into receiving information. On the contrary, he highlights an important point in
that there are two value-orientations in the way one can act. When one acts humanely,
s/he acts in a way to minimize pain, harm or discomfort resulting from the human
condition which we all share. This orientation results from an underlying motive of
compassion. In contrast, when one acts humanistically, s/he acts in ways that project the
ideals of what human actions and choices ought to be (i.e. free, self-determining,
responsible). This orientation results from an underlying motive of respect. Ost
maintains that medicine’s aim is humanistic but should be tempered by the principle of
humaneness, so that physicians ought to “assist patients to achieve the optimal level of
autonomy possible to them” (Ost, p 310) in a sensitive fashion. As a result, the practical
implication of such trajectories is that patients ought to be informed but not bullied into
knowing information. A physician’s tactics of persuasion would thus be essential and
justified in order to help an unwilling patient realize the importance of knowing
information that s/he initially wishes not to know. Additionally, it is interesting to note
that an ethic of care can comprehend such persuasions as “compassionate interference,”
whereby the physician’s actions can be thought of “as a form of care in which the patient
has an opportunity to become autonomous” (Verkerk, p 293). Such actions are criticized
as being a form of “modern paternalism” (ibid) and clearly run counter to Feinberg’s
aforementioned classification of autonomy as a right to sovereign authority without
interference by others.
Mark Strasser responds to Ost’s argument by proposing that individuals can claim a right
to remain uinformed due to John Stuart Mill’s emphasis on liberty and his formulated
harm principle. Strasser does not refute Ost’s contention that rationality is a central
component of autonomy. However he differs from Ost in thinking that one who refuses
information can do so for rational reasons. Strasser begins his reasoning by concurring
with Ost that the ascertainment of whether an individual has relevant information is
problematic because the standards by which to make such judgments are heavily
culturally dependent and therefore one standard cannot be universalized for all societies
and all situations. Strasser continues by citing Mill’s contention that the one making a
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decision is the only one who can judge the sufficiency of his/her own motives that may
induce the individual to incur a risk. Furthermore, considering that liberty consists of
doing what one desires, others are not in a position to (justifiably) override an
individual’s decision to take on certain risks knowingly. Such a claim is not the same as
maintaining that the individual who refuses to be informed of certain information
professes to know what another will disclose (i.e. what s/he could not possibly know).
Rather, the argument follows that what one already knows warrants one to take a risk and
forego “the opportunity to become apprised of [ ] (possibly) unknown information”
(Strasser, p 270). Additionally, Strasser contends that usually there is only a probability
rather than a certainty that harm will arise if an individual remains ignorant about a
certain piece of information (upon his/her specific insistence because there remains the
possibility that the agent would have made the same choice even after acquiring the
additionally relevant information. The question then becomes whether ignorance will
result in certain or probable harm. (One could equally ask whether knowledge will result
in certain or probable harm and the following analysis shall remain the same.) Strasser
theorizes that ignorance can only result in probable harm because there is always the
chance that the ignorant agent will act “rightly” and that the informed agent will act
“wrongly.” If it is only probable harm, then one returns to Mill’s assertion – only the
agent alone can decide whether his/her motives are sufficient to justify taking the risk and
not being apprised of certain information.
Strasser continues his critique of Ost’s argument by claiming that there is no such thing
as a patient’s duty to be informed, in contrast to a physician’s duty to inform a patient,
but that duty of course is coupled with providing treatment or procedures which the
patient has a right to accept or refuse. Strasser bases this critique on the hypothetical
situation of proxy consent, whereby parents refuse to be informed of certain information
in the best interests of their child (especially when time is of the essence) and thus
relegate decision-making to the physician. Considering the rather specific nature of the
example with which he utilizes, it is not obvious that such an argument would equally
apply to a scenario of genetic testing. Nevertheless, Strasser resumes by stating that
while there is no such thing as a “duty to listen,” the refusal to hear information may not
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always be justified. Therefore, he advocates for providing patients with “relevant
information about the relevant information” (Strasser, p 274) in order for them to decide
for themselves whether they wish to receive the relevant information, and hence be
justified in taking a risk and foregoing the information. For example, a physician might
be in possession of certain information about the patient that could harm his/her chances
of survival or recovery, or could render a weak individual so frightened that s/he ceases
to function rationally. In such circumstances, Strasser might argue that the physician
ought to inform the patient that by sharing such information with him/her could lead to
such disastrous outcomes and might actually lead one to be very rational in choosing to
decline receiving the relevant information. However, this approach can be easily
criticized as being absurd because if the physician reveals to the patient that s/he has
information that is relevant to the patient but could cause harm to the patient were s/he to
become aware of it, then isn’t the cat proverbially out of the bag that the physician has
bad news?
Such suggestions are based on scenarios whereby the patient has undergone some sort of
diagnostic testing. However, this does not address situations prior to testing, whereby the
patient has to decide whether or not to undergo a certain (genetic) test which will reveal
certain information about the individual. Knowledge is not yet known by anyone, or
more specifically by the physician, for him/her to give an individual (i.e. the patient)
relevant information about the known information. To address the right to know versus
right not to know debate in such cases whereby an individual has not undergone
diagnostic testing, I shall now turn to Ruth Chadwick’s writings.
3.2 CHADWICK
Chadwick examines both sides of the debate by first claiming that at least four central
concepts are central to the issue: autonomy, confidentiality, privacy and solidarity.
Arguments for the right not to know tend to be based on considerations of privacy,
integrity and self-determination, while the counter-arguments emphasize solidarity and
responsibility. (Since the right to know and the right not to know are opposing
viewpoints, the counter arguments for a right not to know double as supporting
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arguments for a right to know, and vice versa.) The information in question tends to be
of a highly personal and sensitive nature (i.e. genetic make-up).
Before delving into the heart of the discussion, Chadwick first establishes that there is a
right for individuals to know such information (i.e. one’s own genetic status) based on
principles of autonomy and self-determination, whereby the receipt of certain information
can assist an individual in making certain decisions (possibly even reproductive in nature)
and taking or not taking certain actions. The right for others to know another’s genetic
status is less clear cut. It is commonly accepted that one’s medical information is
personal and thus should remain restricted to the knowledge of the individual and the
physician (and other relevant healthcare team members). However in the case of genetic
information, respecting one’s autonomy and confidentiality could affect the individual’s
relatives and/or partner in their capacity to make autonomous reproductive decisions. If
one follows Mill’s harm principle which dictates that one’s liberty should be limited only
when the exercise of that liberty harms others, then respecting one’s autonomous choice
to keep certain genetic information confidential from others could harm those others’
“right to make reproductive decisions in the light of as much information as possible”
(Chadwick, p 16). But can anyone rightfully make such a claim to know as much
information as possible in order to make reproductive decisions? The amount of
information that can be generated regarding one’s reproductive choices is heavily
dependent upon context – both historical and social. Technological advances have
certainly increased Western population’s ability to make more informed decisions about
reproduction, but it is not mandatory to employ them for all individuals thinking about
reproduction. Furthermore, some societies do not yet have the technological expertise
that other societies have. One society’s means to information is not necessarily equal to
another’s. So the phrase “as much information as possible” is unclear as to whether it
refers to a global or local context.
The right of institutions, such as insurance companies, to know an individual’s genetic
status is also questionable depending on how one views such institutions – as either
nothing more than a capitalistic business or one that also serves a social purpose. Of
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particular concern in this matter is that of genetic discrimination, whereby insurance
companies reject providing coverage or charge exorbitant fees for coverage to individuals
that have a genetic predisposition or suffer from a genetically-based disease. Genetic
discrimination is a very real and serious threat to liberal society’s focus and goal of
equality. Chadwick conjectures that the right not to know is typically claimed by an
individual who does not want to have access to information about him/herself, as a
response to others’ claims to have that information.
She then proceeds to list and briefly outline the various arguments in support of a right
not to know. The negative approach leads one to find the arguments for a right to know
to be inadequate and fear that the right to know might become an imperative, forcing
everyone to undergo testing. Another approach focuses on the human condition as one of
limited knowledge and therefore there can be no duty to know. This line of reasoning is
fairly weak because it does not necessarily follow that from this human condition an
individual has the right not to know a certain piece of information when that knowledge
is available.
Chadwick continues by focusing on a number of consequentialist arguments in favor of
the right not to know. The first of these arguments is that being informed of a certain
piece of information can cause harm. This harm could come in the form of psychological
distress – perhaps even to the point rendering the individual incapable of maintaining
his/her rationality or even ability to make autonomous decisions, the idea of which, as
noted above, has been put forward by Ost. Psychological distress from knowing the
unpleasant results of a genetic test could significantly affect the quality of one’s life for
the worse and therefore constitute a harm. Chadwick then aptly mentions the commonly
drawn distinction between knowledge, which is considered to be morally neutral, and its
use or the attitude we adopt towards it, which is socially conditioned. Taking this
distinction into account, one could argue that harm could easily be avoided in receiving
certain information by simply changing his/her perspective of the information, by perhaps
approaching new knowledge with a positive attitude. Of course such a suggestion is
easier said than done, especially considering culturally hegemonic forces at work. (I
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shall further elaborate on this aspect in the next chapter.) Consequentialists will be most
interested in determining whether the overall benefits of acquiring knowledge – such as
helping one to avoid bad outcomes and choose good ones – outweigh its disadvantages –
such as harming the individual’s psyche. Chadwick suggests that perhaps certain kinds
of misery should be given special weight in such consequentialist calculations. (While
some might argue that making such considerations to certain kinds of misery seems to
highlight an individualistic approach to the matter, I contend that it supports an ethic of
care approach, which emphasizes a principle of solidarity in that an individual is
encouraged to empathize with another’s perceptions of pain.) One could also possibly
associate the right not to know with the right to hope if infringing on a patient’s wish to
remain ignorant of certain information will lead one to become certain of something that
flies in the face of his/her hopes. This of course leads one to ask if the right to hope – and
therefore by association, the right not to know – is actually a matter of allowing persons
to delude themselves of certain realities.
Aside from psychological distress, the harm to an individual resulting from being
informed about certain genetic information could also be in the form of serious social
consequences for him/her in terms of stigmatization and discrimination. Chadwick is
quick to note that this point can only strictly be made in restricting the access of others to
the genetic information rather than in the argument for the right not to know. Clearly the
possibility of discrimination can only support restricting access of others to one’s genetic
information, but I disagree with Chadwick regarding stigmatization. As I will further
elaborate on in the next chapter, stigmatization can be internalized, to the point that
receiving certain information can shatter one’s sense of self and thus psychologically
harm the individual.
This sense of self plays an important role in the last two consequentialist arguments
supporting the right not to know. If one were to comprehend autonomy in terms of
empowerment – enabling individuals to feel empowered – then not all (genetic)
knowledge is necessarily empowering. A certain diagnosis could possibly cause an
individual to feel restricted in his/her choices or as I briefly mentioned above, destroy
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that individual’s sense of self. Therefore, the right not to know could actually protect
one’s autonomy or sense of self. (It is worthy to note that this analysis blurs the
aforementioned distinction of autonomy as a capacity versus a right to sovereign
authority.) Additionally, genetic information can be construed as an intrusion into an
individual’s private sphere, most often deemed by liberal society as inviolable. Due to
the often concealed nature of genetic information, persons may develop a sense of self or
identity that is incongruent with their genetic status. The right not to know therefore begs
the question whether an individual ought to be compelled to modify his/her sense of self
in an undesirable way by being informed of his/her genetic status against his/her will. On
the other hand, is it “right” to allow persons’ desire to retain their (possibly misguided)
self-images to trump other considerations, such as solidarity, responsibility and public
health?
Chadwick also elucidates on two arguments opposing the right not to know. One can
view the right not to know as an overly individualistic approach to ethical issues and thus
defies values of solidarity and responsibility owed to others – both values that greatly
contribute to a society’s social cohesion. If certain knowledge has consequences for
others, then it can be deemed irresponsible of a person to choose to not know such
knowledge. Secondly, Chadwick mentions Walter Zimmerli’s suggestion “that public
health considerations provide an argument against a right not to know” (Chadwick, p 20),
and brings up Peter Widmer’s belief that “a sense of responsibility in the society at large
begins with awareness on the part of the individual” (Chadwick, p 21). But then again,
liberal democratic societies cannot impose a duty of solidarity on its citizens.
She concludes her review of the right not to know debate by noting the recent shift
towards a communitarian approach to ethics and medical ethics, which emphasizes the
significance of community and responsibility. This communitarian approach has special
relevance in genetic testing due to its inherent emphasis on relatedness. Moreover,
Chadwick finds that the urge to charge individuals with the responsibility to know their
genetic information and share it with loved ones follows from the idea of supplementing
or even replacing individual rights with considerations of individual responsibilities.
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Ultimately the debate rests on the opposition between individual rights and individual
responsibilities.
3.3 ANDORNO
Now Roberto Andorno constructs an argument in support of the right not to know one’s
genetic status, theoretically based upon the principle of autonomy, and yet maintains that
such a right is neither necessarily absolute nor always implicit but rather must be
explicitly “activated.” Similar to Mairi Levitt’s assertion in The Right to Know and the
Right not to Know, Andorno begins by commenting on the predictive power of genetic
tests, which has the tendency to outpace the availability of effective treatments and the
human ability to cope with knowledge generated from the employment of such tests.
Hence, rather than empowering an individual and promoting his/her autonomy
(understood here as a right to sovereign authority), the knowledge of one’s genetic status
can actually be considered a burden for an individual to bear. Sometimes, due to the
relatively retarded rate at which human ability to cope with new unpleasant diagnoses (as
compared to the rate at which genetic tests develop and advance), the burden of such
knowledge could become so unbearable for an individual that it can lead to severe
psychological depression and a seriously negative impact on one’s family life and social
relationships in general.1 Andorno claims that for some people, discovering “that they
have a genetic condition that places them at a high risk of suffering certain untreatable
diseases could so depress them that the quality, joy, and purpose of their lives would
literally evaporate” (Andorno, p 435). For this reason, he feels that it would be logical 2
to have such people autonomously choose to not receive such potentially harmful
information. While opponents would argue that an individual that refuses such
1
In fact, Kimberly Fulda and Kristine Lykens report on a case where receipt of information regarding a
positive carrier status of a dominant genetic disorder led to a son’s suicide, another son to divorcing his
wife in order from burdening her or planning a family, and another son leaving his fiancée for the same
reason (Fulda & Lykens, p 145).
2
In his article, Adorno writes “it seems reasonable to allow these people to choose not to receive that
potentially harmful information and to continue their lives in peace” (my emphasis). Although Adorno
never actually uses the term “rational” anywhere in his article but instead uses “reasonable” a number of
times, it seems, upon deliberation, that he has incorrectly used the philosophical term and instead meant
“rational” or “logical” as I’ve chosen to use in my own paraphrasing here.
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information is living in ignorance and just deluding oneself, Andorno finds the individual
to thus be capable of living one’s life “in peace.”
Andorno then continues his paper by identifying a number of objections commonly
invoked against the right not to know. First off he notes the apparent irrational attitude of
one who wishes to remain ignorant because it contradicts with the well established
philosophical belief, dating back to the time of Aristotle, that knowledge is intrinsically
good. Secondly, some would argue that a right not to know is reminiscent of former
times when the patient-physician relationship was characterized as paternalistic towards
the patient by keeping him/her ignorant of particular diagnoses and depriving him/her of
choice with regards to medical treatment. Since those not-so-distant days the patientphysician relationship has evolved to become one of increasing disclosure and shared
decision-making. A patient claiming a right not to know would then completely conflict
with physicians’ duty to disclose risks to patients. Furthermore, “the right not to know is
criticized as being opposed to patients’ autonomy, given that the exercise of autonomy
depends on the ability to understand relevant information and only on this basis to
consent to treatment” (Andorno, p 436, emphasis in original). However, an advocate for
the right not to know could frame the patient’s autonomy initially in terms of whether or
not to know specific information. After that autonomous decision is made, further
autonomous decisions could follow regarding treatment, procedures, or how to continue
living one’s life. Lastly, Andorno mentions the objection against the right not to know
made on the grounds that one choosing to claim such a right works against the principle
of solidarity, as elaborated above.
Before concentrating on his main thesis Andorno references a number of ethical and
legislative instruments that explicitly recognize and defend the right not to know. For
example, the Explanatory Report to the European Convention on Human Rights and
Biomedicine “justifies the right not to know by saying that ‘patients may have their own
reasons for not wishing to know about certain aspects of their health’” (ibid).
Additionally, the World Medical Association’s “Declaration on the Rights of the Patient”
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claims that “the patient has the right not to be informed on his/her explicit request, unless
required for the protection of another person’s life” (ibid).
Andorno then begins responding to the common objections that he previously brought up
against the right not to know. He first refutes the assertion that choosing to not know the
results of a genetic test can be classified as a kind of return to physician paternalism
whence physicians were not required to tell a patient everything. Andorno claims that
one should understand autonomy in a wide sense, whereby “people should be free to
make their own choices with respect to information” (ibid, my emphasis). Such an
interpretation of autonomy sufficiently challenges medical paternalism and results in
comprehending the choice to not know as an enhancement of autonomy, rather than a
threat or detriment to it. Additionally, this wide interpretation of autonomy leads
Andorno to assert that respecting an individual’s autonomy serves as the theoretical
foundation of the right not to know “even if the ultimate foundation of this right is the
individual’s interest in not being psychologically harmed” (Andorno, p 437, emphasis in
original). In other words, the right not to know is most fundamentally based upon the
respect for autonomy, in order to ultimately prevent harm to the psychological integrity
of the person. Preventing ultimate harm reinforces the biomedical ethical principle of
non-maleficence, most often characterized by the Latin phrase primum non nocere, which
roughly translates to mean “first, do not harm.”
Interestingly enough, Andorno continues by advocating that a patient could reasonably
claim a right not to know while agreeing to undergo genetic testing (perhaps for the
purposes of public screening). Valid informed consent can still be maintained in such a
situation because the patient’s ignorance does not concern the medical practice (i.e. the
genetic test), but rather its results. However, in such particular situations (whereby the
patient agrees to genetic testing but refuses to know the results) I would argue that there
remains a tension between the physician’s duty to warn a patient of known risks versus
the patient’s right to autonomy regarding receipt of information.
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Andorno then discusses the discord between exercising a patient’s right not to know and
the potential interest of his/her relative in knowing. He points out that most rights are not
absolute and asserts that the right not to know is of no exception. The right not to know
is predicated on the condition that there is no risk of serious harm to other persons.
Individuals cannot validly claim a right not to know and disclosure to others is warranted
if and only if it is necessary to avoid a serious harm to them and some reasonable form of
cure or therapy is available. Additionally, due to concern that public genetic screening
programs might encourage eugenic practices of systematically aborting affected fetuses
(in the case of prenatal genetic testing), the disclosing of genetic information for the
benefit of the common good must be tempered by respect for individuals’ rights.
Andorno concludes his paper by contending that the right not to know cannot be
presumed. Because law and ethics can only operate coherently according to rules,
Andorno feels that the established rule ought to be for patients to have a right to know
their health status. The right not to know would therefore be an exception to the rule (at
least with regard to competent persons). In order for the right not to know to be
legitimate, it must be “activated” by the explicit will of the individual; otherwise it would
be impossible to determine a priori the wish of the patient and s/he is the best one to
judge what are his/her best interests. But one may still inquire as to whether those
patients that reject receiving information are really and truly making that decision in
accordance with their real interests? Because we make decisions based on a variety of
factors, including external factors (e.g. those due to environmental, societal or cultural
influences) perhaps a causally relational approach to autonomy can help here and even
contribute to the right to know versus right not to know debate. I shall shortly turn to this
very matter. But before I do, I wish to first expand upon the concept of stigmatization,
which I feel does not get adequately addressed within the literature despite it’s silent yet
highly influential nature upon individuals’ decision making processes.
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An Element Not Adequately Addressed
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Thus far, the debate on the right not to know has mainly revolved around the concept of
respect for autonomy, specifically based upon the components of rationality and freedom
of will. Implicitly, the autonomy that has been invoked in these debates is that of the
liberal, Kantian persuasion. Care ethicists take issue with such approaches to autonomy
in that they downplay how interactions or relations with others affect one’s ability to
think and decide. In the most extreme form of these care ethics critiques, there seems to
have been a gradual alignment of the concept of autonomy with individualism, where
agents are causally isolated from other agents. The ideal contemporary, Western-based
conception of individualistic autonomy is founded on notions of self-sufficiency and
independence. However the concept of individual autonomy should be distinguished
from individualistic conceptions of individual autonomy. While individual autonomy
solely “implies that agents are separate entities with a capacity for autonomy” (Stoljar &
Mackenzie, p 8) individualistic autonomy goes further than that by suggesting a character
ideal of self-sufficiency and independence whereby values and social practices based on
cooperation and interdependence can threaten or even compromise the capacity for
autonomy. This stripped down conception of agents views them as atomistic bearers of
rights. Kantians would counter that they do not endorse the idea that persons are without
social or interpersonal characteristics. On the contrary, they would argue that such
commitments and relationships do in fact characterize all humans. Nevertheless, the care
ethicist would argue that Kantians simply do not view such ties to be essential to or
definitive of one’s identity. Despite care ethicists’ focus and emphasis on the importance
of social commitments and relationships, they do not believe that all are essential to
humans. Instead, care ethicists find that only the most important commitments and
relationships can constitute or be part of what constitutes the identity of a given person
(Slote, 74).
The biggest drawback of basing arguments in favor of a right not to know on a classic,
individual conception of autonomy is its total lack of ability to address the issue of
stigma. Although not blaringly obvious, stigma can be highly influential in affecting
someone to choose not to know certain information, especially if said information can
have a damaging affect on his/her self-identity. Dworkin glosses over certain types of
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behavior that undermine autonomy, such as coercion, but stigma seems to be not as cut
and dry. The problem with stigma, as with oppression, is that it can be internalized and
thus self-perpetuating, making it difficult for one to just dismiss.
Here I would now like to dedicate some space to clarifying what exactly the concept of
stigma entails and elaborate on how it can affect one’s choices, particularly in the ways it
can incline one to choose not to know information, even if it is about him/herself. Due to
its helpfulness in unraveling the various elements and repercussions of stigmatization, I
mainly focus on Bruce Link and Jo Phelan’s article, “Conceptualizing Stigma,” with its
description of the definitive elements of the concept, elaboration on the social and
individual implications, and recommendations for effective deterrence of the
phenomenon.
4.1 STIGMA
In the aforementioned article, Bruce Link and Jo Phelan begin by discussing how stigma
often times has a negative impact on the lives of those that are stigmatized. Due to the
multidisciplinary nature of the phenomenon itself, the different theoretical orientations
from which researchers approach the concept of stigma results in drastic differences in
what the very concept should definitively entail. As Erving Goffman first noted, stigma
can simply be seen as the relationship between an attribute and a stereotype. Link and
Phelan further elaborate on this simple definition to include five very specific concurrent
components: 1) a human difference is distinguished and labeled, 2) negative stereotypes
are linked to the labeled persons, 3) labeled persons are placed in distinct categories in
order to achieve a degree of separation from others, 4) labeled persons experience status
loss and discrimination leading to unequal outcomes, and 5) labeled persons have less
access to social, economic, and/or political power.
I would like to take a moment to further clarify the implications of some of these
components. (The first component seems fairly self-explanatory and therefore does not
seem to need further elaboration here.) It should first be emphasized that the second
component often occurs automatically. Link and Phelan explain that the automatic nature
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of the second component is very real in that experiments have indicated “that categories
and stereotypes are used in making split-second judgments and thus appear to be
operating preconsciously” (Link & Phelan, p 369). This aspect is important to stress in
order to fully comprehend how we might not even be aware of the presence of
stigmatization, especially when reflecting upon what specifically influences our decisionmaking processes.
The third component which differentiates stigmatized persons from non-stigmatized
persons enables one to think of negatively labeled persons as “fundamentally different
from those who don’t share the label” (Link & Phelan, p 370). What’s very significant
about this component is how it exemplifies the fact that stigma is not a matter of all-ornothing but rather one of degree. In other words, it’s not that a person can be either
stigmatized or not. Instead, “the labeling of human differences can be more or less
prominent” (Link & Phelan, p 377). Furthermore, “the strength of the connection
between labels and undesirable attributes can be relatively strong or relatively weak”
(ibid). Cumulatively what this means is that “some groups can be more stigmatized than
others” (ibid). A very telling example of this phenomenon is how some highly
stigmatized persons “are thought to ‘be’ the thing they are labeled” (Link & Phelan, p
370). More specifically, people that have epilepsy or schizophrenia are described as
“epileptics” or “schizophrenics,” whereas the same cannot be said of people with less
stigmatized diseases such as cancer, heart disease or influenza.
As a slight interjection, a number of factors can influence the degree to which a particular
disease may be stigmatized. First of all, the visibility of a disease corresponds with the
degree of stigma it can confer onto an afflicted individual. The less conspicuous the
symptoms or conditions of a disease are (e.g. physical deformities, visible outbreaks,
erratic behaviors) then the greater the impact they can have on others and subsequent
interactions with them (Kurzban & Leary, p 190). Next, the frequency with which a
disease affects a population can play a role in how stigmatizing it can be for one afflicted
by that disease. The rarer the disease, obviously the more stigmatizing it has the potential
to be, due to the fact that the general population simply is not familiar with it. The
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“unknown” tends to be approached with a certain amount of hesitation, skepticism,
and/or fear. In conjunction with the occurrence of rare diseases, depending upon the
specific populations that are affected by the disease and how long a disease has been
knowingly around can also affect the degree to which having said disease can be
stigmatizing for an individual. If the disease affects an already stigmatized population,
then by association, having the disease confers the same stereotypes as those of the
stigmatized population. Additionally, the longer a disease has been around, the more
familiar it can become to greater amounts of people and thereby approached with less
hesitation, skepticism, and/or fear. Thus, outbreaks or discoveries of new diseases tend
to confer more stigma, but the effect is lessened with the passage of time and greater
familiarity of said disease. Another aspect of a disease that determines its degree of
stigma has to do with its affect on morbidity and/or mortality. Diseases that have a cure
fare far better than those that do not, in terms of stigmatization; for once one is cured, the
stigma associated with the disease vanishes along with the very disease. Additionally,
those diseases that do not have a cure are more stigmatizing than diseases that do have a
cure due to the fact that having the disease could become a life (or even perhaps a death)
sentence. However, if the disease were to have a treatment or therapy, that were to ease
the symptoms of the disease for example, this would be less stigmatizing than a disease
that had neither cure nor treatment. Finally, but not less influential in terms of stigma,
there is the matter of how a disease is transmitted. Communicable diseases are far more
stigmatizing than genetically inherited diseases, due to the fact that there is an element of
personal responsibility connected to preventing communicable diseases – particularly
blood-borne ones. Because air-borne diseases are far harder to prevent the personal
transmission of as compared to blood-borne ones, they can be thought of as less
stigmatizing than diseases contracted through the exchange of bodily fluids; while at the
same time they are more stigmatizing than genetically inherited diseases.
Now for the fourth component, “a rationale is constructed for devaluing, rejecting, and
excluding” (Link & Phelan, p 371) persons when they are labeled, set apart and linked to
undesirable characteristics. This then ultimately leads to the stigmatized person
experiencing some form of status loss and/or discrimination. Link and Phelan write that
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one of the most immediate consequences of “successful negative labeling and
stereotyping is a general downward placement of a person in a status hierarchy” (ibid)
whereby the status of the stigmatized is reduced in the eyes of the stigmatizer. A valid
question here would be if the status reduction is merely perceived or actual. However
such a metaphysical question need not be answered because it is enough for such a status
loss to be perceived by the stigmatizer for the person to legitimately develop a fear of the
repercussions of such a status lowering. Hence, in anticipation of the negative effects of
a lowered position in a status hierarchy, one begins to fear the personal rejection that is
sure to come (if not only perceived to come) from those around them, ranging from close
confidants to more removed members of a community. The expectation of stereotyping,
also known as “stigma consciousness,” can become part of a person’s world view. When
this happens, a slew of serious negative consequences could follow for the stigmatized
person, including a compromised quality of life and low self-esteem regardless of
whether anyone in the immediate context of the person has engaged in any obvious forms
of discrimination (Link & Phelan, p 374). Such negative consequences are intensified by
the very real extent to which a drop in status hierarchy leads to negative modifications
affecting things like selection of sexual partners or longevity.
As another interjection, I would like to take a moment to expand on the concept of
stigmatization’s affect on one’s status hierarchy which thereby can affect one’s selection
of sexual partners. To me, this seems like a fairly serious means of discrimination. The
logic follows that if someone is diagnosed to be a carrier of a certain genetic disorder –
specifically a highly stigmatized one – then presumably others (potential sex partners)
will not want to choose that person to be their life partner because of the implications it
could have on any potential offspring. Such a mindset is highly discriminatory and could
therefore lead to an individual realistically and rationally choosing to not want to know
such damning information about him/herself. In such specific instances, Chadwick is
correct in asserting that the individual who claims a right not to know can be interpreted
as a protective response to a partner’s claim to know such information (for the purposes
of making better informed reproductive decisions for him/herself). However, while such
an interpretation may be true, it can be equally true that the main motivation for the
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individual to choose not to know stems from a fear of rejection from the partner,
predicated on the phenomenon of stigmatization.
The fifth and final component of stigma that Link and Phelan note, which deals with
power differentials between stigmatized and stigmatizer, has not been emphasized by
other authors that write on stigma. As Link and Phelan note, “stigmatized groups often
engage in the same kinds of stigma-related processes in their thinking about individuals
who are not in their stigmatized group” (Link & Phelan, p 376). However it is precisely
the power differential that determines who is actually stigmatized because it is the group
that possesses the social, cultural, economic and political power that are able to have their
cognitions lead to serious discriminatory consequences. A clear example which Link and
Phelan provide is that of patients suffering from serious mental illness that label
clinicians as “pill pushers.” Due to patients’ lack of social clout as compared to
clinicians, it is actually the patients themselves that are stigmatized, on account of their
mental illness, rather than the clinicians. The authors furthermore note that the “amount
of stigma that people experience will be profoundly shaped by the relative power of the
stigmatized and the stigmatizer” (Link & Phelan, p 378). Therefore the greater the power
differential between stigmatized and stigmatizer, the greater the stigma will be
experienced by the stigmatized.
In addition to elaborating on the various components of stigma, Link and Phelan discuss
some of the implications of stigmatization. One of these implications deals with the
severe persistence of stigma, i.e. the predicament by which “negative consequences of
stigma are so difficult to eradicate” (Link & Phelan, p 379). In order to understand why
it is so difficult to eradicate the negative consequences of stigma, one first has to
understand that stigmatization comes about due to a range of both flexible and extensive
mechanisms. These mechanisms include individual discrimination, structural
discrimination, and self-perpetuating discrimination that results from a stigmatized
person’s beliefs and behaviors. Each of these three generic mechanisms has various
methods that can successfully cause a stigmatized person to experience the negative
consequences of stigmatization. Therefore, due to the multiplicity of mechanisms that
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cause stigma, when a stigmatized group counteracts a “specific mechanism that leads to
the undesirable outcome they seek to escape” (Link & Phelan, p 380), by either
confronting or avoiding the specific mechanism, “the benefit is only temporary because
the mechanism that has been blocked or avoided can be easily replaced by another”
(ibid). For example, if one were to avoid individual discrimination, by say not finding
out if s/he were a carrier for a serious genetic disorder, then the stigma surrounding that
certain disease would still prosper, for such mechanisms as structural discrimination and
self-perpetuating discrimination can still be in place, effectively maintaining the firm
roots for that stigma.
Link and Phelan note another and related reason to the persistence of stigma – namely the
fact that there are a multitude of associated negative outcomes. Due to this detail,
“members of stigmatized groups are disadvantaged in a broad range of life domains”
(ibid), such as employment, social relationships, housing and psychological and physical
well-being (specifically when health insurance coverage is denied as a result of having or
having a predisposition of a stigmatized genetic disorder, for example). Much like in
confronting or avoiding the mechanisms that bring about stigma, if one confronts or
avoids a stigma-related outcome, other associated negative consequences can crop up in
place of the originally blocked or avoided outcome. A clear example of this is John
Henryism, whereby physiological signs of distress develop as a means to coping with
prolonged exposure to psychological stresses.
Thus due to its persistent nature, the solution to the dilemma of stigma is not merely a
matter of changing one’s attitude towards the knowledge, as implied by Chadwick’s
distinction between morally neutral “knowledge” and the socially conditioned attitudes
that are developed towards “knowledge.” In order to seriously deter stigma and its
negative consequences, Link and Phelan suggest focusing on two principles. The first of
these two principles is that any approach to change stigma must be both multifaceted and
multilevel. “It needs to be multifaceted to address the many mechanisms that can lead to
disadvantaged outcomes, and it needs to be multilevel to address issues of both individual
and structural discrimination” (Link & Phelan, p 381). The second principle for any
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approach that attempts to change stigma is that it must address the fundamental causes of
stigma. This entails either changing long held “attitudes and beliefs of powerful groups
that lead to labeling, stereotyping, setting apart, devaluing, and discriminating” (ibid) or
changing “circumstances so as to limit the power of such groups to make their cognitions
the dominant ones” (ibid). As Link and Phelan argue, an approach that combines these
two principles is the only way to effectively combat stigma and its effects.
Obviously this proposal for effective deterrence of stigmatization cannot happen
overnight. Social change takes time and during that transitional time the fact remains that
fear of stigmatization can genuinely lead one to not want to know information about
him/herself, especially when that information remains capable of stigmatizing the
individual. Therefore, I propose that a concept of relational autonomy and its supporting
ethic of care approach might be beneficial in addressing both the right not to know debate
and the very real and influential social phenomenon of stigmatization.
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Relational Autonomy and Its Application to the Debate
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As previously mentioned in chapter two (see section 2.1), the reader might recall that
relational approaches to autonomy emphasize the “vexed relationship between autonomy
and socialization” (Mackenzie, p 4). Because persons are socially embedded, agents’
identities and personal choices are formed within the context of social relationships,
shaped by a complex of intersecting social determinants such as race, class, gender and
ethnicity. Under the relational approach to autonomy relations of dependency are seen as
crucial for the development of persons, agents’ sense of themselves and their capacities,
meaning that dependency is essentially required for the development and exercise of
autonomy. Therefore the implication is that if one does not initially have relations of
dependency, then one cannot be fully autonomous. Additionally, maintaining relations
of dependency are necessary in order to maintain the capacity for autonomy. By
continuing with this logic, it is then not so difficult to imagine that persons often base
their choices on the probability that they can continue to maintain relations of
dependency.
Now particularly in the case of genetic testing, where genes are inherently relational, it
seems essential to dissect the issue of autonomous decision making in terms of the social
web that they tend to be made. At first glance, it would seem that relational autonomy
would suggest that a right not to know simply cannot exist. This is due to relational
autonomy’s emphasis on responsibilities to others, arising essentially from its focus on
social relations of inter-dependency. Therefore, it would seem logical for example, for a
mother to undergo genetic testing in order to determine if she is a carrier of the breast
cancer gene, because she owes it to her family to find out such information. In fact, as
Nina Hallowell reports in her article “Doing the right thing: genetic risk and
responsibility,” many women who attend genetics clinics do so from a perception of
“having a responsibility to their kin (past, present and future generations) to establish the
magnitude of their risk and the risks to other family members, and to act upon this
information by engaging in some form of risk management” (Hallowell, p 597). In this
way, these women present themselves as “interdependent” selves, as opposed to
individuated or autonomous agents. It is precisely this feeling of genetic responsibility to
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others that causes these women to forego their right not to know their genetic risks.
(However, it could be argued, especially from a classical, liberal standpoint on autonomy,
that the possible associations of guilt generated by one’s feeling of genetic responsibility
might actually be threatening one’s autonomy.)
Most of us, on the other hand, live in a liberal society, whereby we live our lives for
ourselves and not for others. Regardless, this does not mean that we do not take our
responsibilities to others into account when making personal decisions, especially when
said personal decisions can have an impact on those that one feels responsible towards.
Essentially when we lead our lives and make personal decisions a tension continually
exists for us all between indifferent individualism and a concern for others. In making
decisions one does not necessarily always have to choose to follow his/her free and
independent will. The person may willfully and reasonably choose to subordinate his/her
own interests to the perceived collective interest of others (i.e. relatives). On the other
hand, one does not have to do this. Nor does it necessarily qualify as selfish if one
chooses to not know. For if finding out certain information meant that an individual’s
world and identity would probably crumble and thereby lead one to a wretched state
where life looses meaning for him/her, then it would seem at worst masochistic and at
best irresponsible for one to willingly choose to break one’s sanity for the sake of his/her
obligations to others.
This is precisely where a care of ethics approach comes into play. Contrary to the
implications brought on by the term “care,” a care of ethics approach does not dictate that
individuals should be selfless and totally unconcerned with one’s own well-being.
Instead, care ethics highlight how individuals’ empathy and empathic concern for others
“occurs against a background of natural and persisting concern for one’s own wellbeing”
(Slote, p 116). In fact, this self-concern sets limits as to how much empathy or concern
an individual can have for others. Empathy that goes unchecked would render an
individual practically incapacitated for s/he would never be able to get anything done
because s/he would not be able to properly care for his/her own needs. As trite as it may
sound, one must care for oneself before s/he can genuinely care for others. Therefore, it
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would be completely rational and in accordance with both relational autonomy and a care
ethics perspective for an individual to choose to not know results of a genetic test that has
a serious potential to demolish one’s self-image, self-esteem, and sanity all in one fell
swoop. In this way, maintaining one’s (possibly misguided) self-image by choosing to
not know does not necessarily trump but can actually contribute to principles of solidarity
and responsibility, because such a decision can be made in order to care for oneself
thereby enabling him/her to help care for others.
5.1 SHALLOW VERSUS DEEP CONCEPTIONS OF RELATIONAL AUTONOMY
I now wish to turn to the issue of how relational autonomy can adequately address the
dilemma of stigmatization. Just as there are numerous ways to dissect the familiar and
well-established concept of individual autonomy (as discussed in the first chapter), there
also are many different ways to approach the concept of relational autonomy. Mackenzie
and Stoljar, for example, propose a distinction between constitutive conceptions of
relational autonomy and causal conceptions. The former focuses on social constitutions
of the agent or the social nature of the capacity of autonomy itself, while the latter
focuses on ways in which socialization and social relationships impede or enhance
autonomy. In reviewing the literature on relational autonomy, I was particularly struck
by Diana Meyers’ answer to the feminist conundrum of women in oppressed societies
autonomously choosing “warped desires.” Her proposed solution is that “not all desires
should be afforded equal credence or weight” (Mackenzie & Stoljar, p 18). According to
Meyers, the uncritical acceptance of social norms or expectations does not yield real
autonomous desires. Only “through the exercise of skills of self-discovery, selfdefinition, and self-direction” (ibid) can one develop actual autonomous desires.
Influenced by such reasoning, I would like to propose another distinction with regards to
relational autonomy, especially with respect to the right not to know debate – a shallow
versus deep conception of relational autonomy. Within the shallow conception
(“shallow” as in accepting something at face value), any and all societal and/or cultural
influences are considered valid influences on one’s autonomy. The shallow construction
of relational autonomy highlights human beings’ inherent need to feel as part of a social
unit or group (see Kurzban & Leary, p 187). In this way, even stigmatization is relevant
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and acceptable to shape one’s personal choices. In contrast to Andorno’s assertion that
the right not to know cannot be absolute, the shallow construction would argue that it is
absolute, based on any individual’s perceived fear of stigmatization.
However, as Mackenzie and Stoljar cite, John Christman believes that critical reflection
yields autonomy only when processes of reflection have not been influenced by
“illegitimate external influences.” As he explains, critical reflection is necessary in order
to determine whether influences are illegitimate. If an agent revises his/her
identifications, due to becoming aware of external influences through the process of
critical reflection, then such influences indeed are illegitimate. Therefore, if we follow
Christman’s criteria, if one were to fully dissect the reasons why s/he did not want to
know certain information and the result essentially came down to acknowledging that one
feared becoming stigmatized, then the real question remains if said acknowledgment and
realization leads him/her to change his/her desire to know said information. However, as
understood from above, stigmatization is a fairly thorny matter in that it can be
internalized and thus self-perpetuating. So how can one separate him/herself from
thinking those thoughts which perpetuate particular stigmas and determine if stigma is a
legitimate influence on his/her decision-making process?
In order to solve this problem, let’s try a thought experiment. For the purposes of this
experiment, let’s say that there is the possibility of finding out if someone is a carrier of a
late onset genetic condition which is highly stigmatized due to a number of factors: 1)
there is no cure for it, 2) there is no treatment for it, 3) very few people in the world are
affected by it, and 4) it causes one’s skin to turn blue. It would be perfectly rational for
an individual to choose not to know if s/he is the carrier of such a condition because it
could shatter his/her self-perception and lead to other negative consequences including
lower quality of life and depression. Now say we were to slowly work on destigmatizing the condition, first of all by developing an effective albeit costly makeup
product that allows them to hide the blue condition of their skin. The same individual
still might rationally choose not to know such information if they believe that they would
not be able to access such makeup due to financial constraints. Now let’s say that all the
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initial conditions remain the same, but that the cost of the makeup has dropped and is
now tenable for that individual, meaning that there still is no cure and very few people in
the world are affected by this condition. I emphasize the aspect that few people in the
world remain afflicted by this condition because it could certainly influence a person’s
perception of how life would be for him/her (i.e. fairly isolating). Certainly it seems
within the limits of reason that the person choose to not want to live such a life, that it is
not in accordance with his/her view of the “good life” and how s/he particularly wants to
live it. Now let’s say that a sizeable population is afflicted by the condition which has an
affordable makeup cover-up treatment, but still no cure. Is it still valid for the person to
reject knowing if they are a carrier of this disease? At this point, the disease is much less
stigmatized than at first portrayed in our thought-experiment. In correlation, it seems to
be less rational for one to choose to not know if they are a carrier for such a condition.
What this thought-experiment seems to prove is that just as stigma is a matter of degree,
the rationality applicable to rejecting to know information about a condition is contingent
upon the degree of stigma it could confer upon an individual were one to be diagnosed
with it. The thought-experiment also proves how the relational approach to autonomy is
better equipped to deal with such issues (of stigma) as compared to individual approaches
because relational approaches fully grasp the importance of maintaining social relations
and how such considerations can easily factor into individuals’ choices (with regard to
knowing information). In this way, relational autonomy seems to be a best of both
worlds device that incorporates the values of both individual autonomy and a care ethics
perspective.
Now, relational approaches to autonomy are particularly concerned with analyzing the
role that social norms and institutions, cultural practices and social relationships play in
shaping beliefs, desires and attitudes of agents. Additionally, relational autonomy
examines the development of competencies and capacities necessary for autonomy, such
as self-reflection, self-direction and self-knowledge. Oppressive socialization and
oppressive social relationships can impede autonomous agency, particularly when they
restrict agents’ freedom by limiting the range of significant options that are available to
them. Once internalized, oppressive socialization practices can block agents’ capacities
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for detecting whether the norms are right. This point leads me to what I would like to
propose as the deep conception of relational autonomy (“deep” as in delving through
layers of matter in order to get to the heart of it all), whereby not all societal or cultural
influences are valid. Like the aforementioned authenticity models of individual
autonomy (refer to section 1.1), the deep conception of relational autonomy necessitates
critical reflection in order to discern between legitimate and illegitimate social influences
on one’s autonomy. Under the deep conception of relational autonomy, stigma can be
comprehended as invalid in influencing one’s identity and personal preferences because it
seems to be self-imposed or perpetuated (i.e. perceived subjectively rather than
objectively actualized). While there are various determinants of stigma that can be
measured, it is not necessarily an objective fact but rather considered to be a matter of
subjective degree, particularly on a micro, or individual, level. In this way, the deep
conception of relational autonomy harshly judges influencing factors to be valid strictly
based upon lines of objective reality. Additionally in using the deep conception,
stigmatization can be judged to be a subverting influence on one’s autonomy because
stigma can be seen as originating from society at large, rather than a particular individual
who is close to a stigmatized person. And as I have mentioned before, relational
autonomy does not prescribe to the notion of blindly accepting any and all relationships
as crucial to one’s autonomous decision-making. Only those relations that are close to
and constructive of one’s identity are critically relevant to one’s autonomy. Although,
because a society’s general notions of stigma can be internalized on an individual level,
then those persons that are close to the stigmatized individual could potentially personally
harbor said stigmatizing thoughts and feelings.
This therefore leads me to speculate that perhaps it is best not to conceive the deep and
shallow conceptions of relational autonomy as either/or concepts, meaning that one
should only adopt either a deep or shallow conception of relational autonomy when
dealing with the issue of a right not to know. Instead, it might be better to view deep and
shallow as endpoints on a continuum. After all, not all genetic disorders or
predispositions are equally stigmatized. For example, with the medical progress in terms
of chemotherapies, cancer is not necessarily a death sentence anymore, especially varying
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with regard to the type of cancer. So if genetic testing were to determine a predisposition
to developing a certain type of cancer, it might not be as stigmatizing as compared to a
diagnosis of Huntington’s disease. Of course, the stigma associated with cancer has
lessened not only due to medical progress in terms of treatment, but also because it has
become normalized, largely due to the fact that the number of people affected by the
disease has grown exponentially over the past few decades, as opposed to those affected
by say a “rarer” disease such as Huntington’s. Therefore, perhaps the best way to
approach the right not to know using a relational approach would be to consider the
specific case and what degree of stigma is involved. Although this approach is
particularly relevant when the fear of stigmatization is the most influential factor in an
individual’s choice to not know certain information, it is also applicable in cases where
the fear of stigmatization is merely one of several contributing factors to that person’s
decision.
And so in summary, the fear of stigmatization can be a valid influencing factor for an
individual deciding to not know information resulting from a genetic test. The degree to
which a condition is stigmatized is relevant in determining the validity of its influence in
such a decision. Owing to human beings’ innate need to “belong” to social groups, the
higher the degree for which a condition is stigmatized, the more likely one will validly
fear having or developing said condition, due to the negative social ramifications (i.e.
ostracism) that are likely to occur for an individual that has the condition. Conversely,
conditions which are stigmatized to a relatively low degree should not foster such fears.
If such fears arise in an individual with respect to a condition that is not highly
stigmatized, then they would be irrationally based because there would be a low
probability that negative social outcomes would ensue for an individual solely as a result
of having said condition. In using a relational approach to autonomy, somewhere
between a shallow and deep conception, depending upon the specific genetic condition
that is being tested, one can determine if fears of stigmatization are substantiated enough
to warrant a rational choice in not knowing whether one has or has the propensity of
developing said condition. Highly stigmatized genetic conditions should be paired with a
relational autonomy approach that skews towards a shallow construction with regard to
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the issue of not knowing, thereby validating an individual’s autonomous choice to not
know. Alternatively, if the specific genetic condition is not highly stigmatized, or
stigmatized to a relatively low degree, then the relational autonomy approach should be
skewed towards a deep construction, thereby invalidating an individual’s choice to not
know based on an irrational fear of stigmatization. All of this – stigmatization and
relational autonomy in both its shallow and deep conceptions – adds another dimension
to the right not to know debate; a dimension that has not been previously addressed with
traditional notions of autonomy.
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Conclusion
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The relational approach to autonomy can both affirm and negate a right not to know, at
least with respect to genetic testing. While the classic individual approach to autonomy
sees moral questions in terms of rights, the relational approach, with its focus on
interdependence, comprehends moral questions in terms of responsibilities. Therefore,
one could frame the debate of a right not to know as either a duty to know due to
humans’ interdependence or a responsibility to not harm, depending on which stance of
the argument with which one sides. For those that view the matter in terms of a duty to
know, the individual essentially subjugates his/her desires to those of others for whom
s/he feels responsible towards. However, for those living in a liberal society, no one is
required to do such a thing. Regardless, relational autonomy clearly underscores the
reasoning behind such “sacrificial” decision-making, for one’s obligations felt towards
his/her relatives could validly influence his/her autonomous preferences. On the other
hand, relational autonomy also supports claims for a responsibility (on the part of
physicians) to not harm their patients in telling them information that they themselves
would render as devastating for themselves. As Strasser argues, no one other than the
patient can best determine if such information is capable of devastating him/her.
As I’ve tried to construct my argument, a relational approach to autonomy focuses on
human relations and the influence those relations have on an individual’s decisionmaking process. Considering human beings’ fundamental need to “belong” and be part
of a community, stigmatization can rightfully cause one to fear the consequences of
knowing particular information about oneself, particularly if said information has the
potential to negatively influence one’s social relations. However, not all stigmatization
should be considered a valid factor in influencing one’s decision to not know
information. It is essentially the degree of stigma for which a particular condition or
disease could confer upon an afflicted individual that correlates to the probability of harm
and validity of the influence. I therefore agree with Andorno’s position that the right not
to know cannot be absolute, especially in terms of basing such decisions on a fear of
stigmatization. While I cannot suggest a definite threshold for stigma which would
determine a certainty of harm and validity of influence, one should consider a specific
condition in respect of a spectrum of stigma. If a condition tends to be on the higher side
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of the spectrum, then the fear of stigmatization can be considered a valid and thereby
rational influencing factor upon an individual choosing to not know certain genetic
information. In contrast, if the condition is on the lower side of the stigma spectrum, then
relational autonomy cannot support an individual’s claim to not want to know genetic
information for fear of the stigmatization that knowing would inflict upon him/her.
Conditions that are not so stigmatizing are therefore not likely to cause harm to the
individual in terms of socialization (i.e. one would not likely be shunned by the
community, especially by those relations that are of supreme importance to the
individual).
Furthermore, I combined a relational autonomy approach to the right not to know debate
with elements of an ethics of care perspective. In doing this, one understands one’s
choice to not know about a stigmatizing condition as fairly rational and anything but
selfish. In fact, it would be highly responsible for a caring individual to not want to know
about a genetic condition, particularly when knowing such information could shatter that
individual’s world and identity to the point that it would change them entirely and
perhaps for the worse. In order to remain an individual capable of entering into and
maintaining caring and interdependent relations with others, then s/he must care for
him/herself. An essential component of that requires one to maintain his/her sanity, selfesteem and identity. If not knowing a genetic status is part of that, then so be it.
For the purposes of brevity for this thesis, I focused on the right not to know debate with
regard to finding out information from a physician. Obviously there are further
complications with a right not to know involved in an individual finding out genetic
information and then deciding whether or not to share that information with relatives. Do
relatives have a right not to know such information, especially if it comes up in casual,
informal discussions? The purview of this thesis does not address such specific
instances.
Additionally, I did not adequately address the burden of acquiring knowledge in terms of
one’s responsibility to then share that information with others. For example, if one were
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to find out that s/he were a carrier for Tay-Sachs, would s/he then be required to inform
his/her partner about said predisposition, particularly if both partners were planning on
having children together. If an individual were reasonably afraid of his/her partner’s
rejection based upon a genetic predisposition, then it seems that the relational autonomy
principle and a care of ethics perspective is not sufficient enough to determine a decision
one way or the other, for the quality of life of the possibly afflicted offspring also comes
into play.
6.1 FURTHER APPLICATIONS
As for other sorts of testing – not solely genetic testing – relational autonomy cannot
necessarily support a right not to know, particularly when a high probability of mortality
or serious morbidity is at stake. Such examples can entail HIV/AIDS or tuberculosis, or
even newly discovered air and blood-borne diseases that as of yet do not have a cure or
adequate treatment. I agree with Zimmerli’s contention that public health can definitely
trump individual rights. The public’s right to life, and a relatively healthy one at that,
surpasses an individual’s right to reject knowing information that has the potential to
stigmatize said individual. While stigmatization is obviously difficult to eradicate, due to
its persistent nature, efforts should be made to seriously eradicate it lest masses go
untested and untreated due to individuals’ fear of the negative consequences of stigma
associated with such diseases.
On the other hand, there are contagious diseases that do not have cures but have
successful therapies associated with them, that nonetheless carry with them a relatively
high degree of stigma. What easily comes to mind as examples of this are the sexually
transmitted diseases of HPV and herpes. Research has yet to prove definitive links
between such diseases and negative effects on reproduction or even predispositions for
acquiring later onset diseases (such as cervical cancer). Currently a number of studies
suggest that there are certain correlations. At this point in time, it might be wise to stay
cautious and not allow an individual’s fears of stigmatization to trump aims of public
health.
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Thus, relational autonomy can not always support a right not to know information about
having a certain disease. It largely depends upon the kind of disease and the numbers
that are potentially affected by said disease. The fewer the number of people that could
become affected by a disease, such as with genetic diseases that are limited to the
individual and his/her progeny, then the greater the validity of one’s claim to a right not
to know, based upon relational autonomy. However the same does not hold true for far
more infectious diseases, especially those that cause high morbidity and/or mortality.
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(adopted 2005, amended