waiver of informed consent, cultural sensitivity, and the problem of unjust families and traditions

14 H A S T I N G S C E N T E R R E P O R T September-October 2002

Caring for patients from different cultures pre-sents a variety of challenges. One of the mostcomplex centers on a worry that the formal

requirements for obtaining informed consent mayimpose a Western ideal of personal autonomy onsome minority patients, especially those who comefrom cultures that favor what appears to be a family-centered model of decisionmaking over a more indi-vidualistic mode.1 Contrary to the current informedconsent standards of full disclosure and patient self-determination, many minority patients may wish toremain uninvolved in the medical decisionmakingprocess, wanting instead to defer to their families’choices.

In one well-known study published in the Journalof the American Medical Association, for instance, re-searchers reported that elderly Korean Americans andMexican Americans were less likely than elderly

African Americans and European Americans to be-lieve that a patient should be told of a terminal prog-nosis (35 percent and 48 percent versus 63 percentand 69 percent) and less likely to believe that the pa-tient should make decisions about the use of life-sup-port technology (28 percent and 41 percent versus60 percent and 65 percent). Elderly Korean Ameri-cans (57 percent) and Mexican Americans (45 per-cent) were said to be more likely than the other twogroups to believe that the family and not the patientshould make end of life decisions.2

Cultural differences like these warn us of a poten-tially serious problem in the delivery of heath caretoday: namely, that providers who are unaware ofsuch variable expectations may inadvertently trans-gress the cultural integrity and personal dignity ofsome of their minority patients through well-mean-ing efforts to obtain informed consent in the usual,patient-centered manner—contravening, in theprocess, the very principle of respect for persons thatthe doctrine of informed consent was meant to pro-tect.

To be autonomous, a person must also have authentic moral values. She must act on her own

values, not on values that were improperly pressed upon her. To respect a patient’s autonomy, then, a

caregiver must do more than carry out her requests. The caregiver must honor the patient’s authentic

requests. But how to do that?

b y I N S O O H Y U N

Waiver of Informed Consent, Cultural Sensitivity, and the Problem of Unjust Families and Traditions

Insoo Hyun, “Waiver of Informed Consent, Cultural Sensitivity, andthe Problem of Unjust Families and Traditions,” Hastings Center Re-port 32, no. 5 (2002): 14-22.

H A S T I N G S C E N T E R R E P O R T 15September-October 2002

In response to this concern, somecommentators have recommendedthat providers broaden their view ofautonomy to accommodate the cul-tural values ethnically diverse patientsmight bring to medical decisionmak-ing, including a preference to waivetheir right to informed consent andrelinquish decisionmaking authorityto their families. Lawrence Gostin hassuggested that the medical communi-ty can best preserve its overall com-mitment to personal autonomy by al-lowing patients to stray from a West-ern model of independent medicaldecisionmaking and act in the man-ner that best accords with their owncultural values.3 According to thisview, providers can help advance thisgoal by first asking their minority pa-tients which they would prefer: to beinformed about their illnesses and in-volved in making treatment decisions,or to have their families handle thesematters for them.4

This proposal seems consistentwith the medical profession’s currentnorm of allowing variable degrees ofpatient involvement, as directed bythe patient’s values. That is, since apatient’s right to self-determinationincludes both the right to decidewhether to receive full informationand the right to opt out of makingtreatment decisions altogether, mostaccept that physicians may be dis-charged of their duty to fulfill formalconsent requirements at the request oftheir patients.5 This idea appears to bemodified only slightly by the claimthat the standard course for obtaininginformed consent can be justifiablyset aside when patients communicatea culturally based desire not to be in-formed of their diagnosis or prognosisand to have their families make deci-sions for them.6

The call for cultural sensitivityshould be lauded for encouragingphysicians to consider such diversesorts of patients’ values. Nonetheless,the ethical issues involved in this callare much more complex and difficultthan is frequently recognized. Theycannot be resolved by merely broad-ening our view of autonomy.

My chief concern is that this easysolution rests on an inadequate con-ception of personal autonomy and ig-nores the possibility that some pa-tients’ values might not be authenticfor them, in the sense of being free ofcoercive formative influences. This isa serious mistake. In order to act au-tonomously, one must not simply acton the values one happens to have;one must act on those values that maybe called “one’s own” in a morally rel-evant sense.

Call this the authenticity conditionof individual autonomy. At the veryleast, this crucial oversight may leadsome medical ethicists and health careprofessionals to an immoderate opti-mism about how easily one can recog-nize a patient’s waiver of informedconsent as a truly autonomous choice.At worst, physicians may unwittinglylicense the continued control by un-

just families of vulnerable and power-less members. Oftentimes, this con-cern will be especially sharp when thepatient is a woman.

My intention here is not to attackany particular cultural group, nor tosuggest that all immigrant or minori-ty families have unjust family rela-tionships. Either maneuver would bepresumptuous, if not brazenly offen-sive. It would be both a moral and asociological mistake to treat culturalgroups as monolithic entities, and toignore the complex intracultural andintergenerational differences that existin every community. As Seyla Ben-habib warns, philosophers and othertheorists must avoid relying on anaïve sociology whereby “cultures arepresented as hermetic and sealedwholes; the internal contradictionsand debates within cultures are flat-tened out; the different conceptual

and normative options which areavailable to the participants of a givenculture and society are ignored.”7

While it is easy to imagine cultures(particularly those we know very littleabout) as stable, unchanging, and har-monious, in reality cultures are adap-tive, open-textured, and permeatedwith opposing interests.8 This is a factwe must bear in mind from the verystart.

On account of this intraculturalvariability, then, a careful philosophi-cal examination of the informed con-sent concerns must look beyond theusual cultural norms of the patient’sethnic community and focus more lo-cally on the dynamics of that patient’sfamily and the circumstances sur-rounding that patient’s desire to relin-quish his or her decisionmaking au-thority. I recommend this approachbecause people’s views and attitudes

toward their inherited traditions aresimply too diverse for the complex is-sues of personal autonomy to besolved by broad appeals to culture.While a patient’s ethnic communityand cultural heritage certainly oftensupply many of his or her values, it isa further question whether the patientis acting autonomously when follow-ing them.

This last point directs us to the au-thenticity condition. My aim is toprovide a fuller explanation of the au-thenticity condition, along with ananalysis of the general conditionsunder which a patient’s waiver of in-formed consent would be nonau-tonomous and ethically problematic,even in certain cases where the patientmight actually want to defer to thefamily’s wishes.

To act autonomously, one must not simply act on

the values one happens to have; one must act on

those values that may be called “one’s own” in a

morally relevant sense.


The Significance of Families

The family is an appropriate unitof analysis from which to begin

our present investigation for severalreasons. There are four aspects of thefamily that are directly relevant to theargument I wish to develop, and aquick account of them here will helpset up my approach.9

First, families are where many cul-tural traditions are taught, practiced,and internalized, making familiespowerful social conduits for culture.Although people can absorb culturalinfluences from many differentsources, the routine activities of afamily effectively help determine thedegree to which a specific culturalheritage becomes embodied in thelives of its members.

Second, through the customs andprojects they pass to the young andthe manner in which they focus theirenergies and resources, families alsocultivate and sustain what might beregarded as an overall “familial char-acter.”10 Some families, for example,may be said to be more sociable, artis-tic, religious, traditional, or egalitari-an than others, depending on thetypes of commitments and intereststheir members share and promote.

Third, in addition to the develop-ment of a distinct familial character, itis also largely, and usually, within thebounds of the family that individualsacquire and maintain a subjectivesense of identity.11 A person’s self-con-cept is shaped to a great extent by hisor her familial ties and shared histo-ries with loved ones. As MichaelSandel, Alasdair MacIntyre, andother communitarians are fond ofsaying, people come deeply “embed-ded” in personal relationships andshared social roles and practices; theyare not unconnected, unaffected, in-dividual islands, but sons, daughters,fathers, mothers, and so on.12

Last, families are important be-cause they help support some uniqueand intrinsically valuable ends, suchas shared personal affection and akeen sense of emotional enrich-ment.13 Families are capable of har-

boring a degree of love and intimacyrarely found in other segments of so-ciety.

An implicit recognition of the im-portance of the family motivates, inpart, the growing tendency amongbioethicists to reject individualisticconceptions of autonomy that are notattuned to the lives of real people whoare bound together in families. Addedto this, of course, is the concern thatthe standard requirements for obtain-ing informed consent may runcounter to the cultural values of somepatients and their families. In light ofsuch issues, some theorists have rec-ommended that we reconceptualizeautonomy as the right and ability ofpersons to act on their values, howev-er dissimilar these values may be frommainstream Western culturalnorms.14

This would be a welcome change.It would have the happy effect ofleaving open the possibility that anautonomous person can choose to acton his more altruistic and sociallyconscious values rather than a child-ishly narrow sense of self-regard—provided the former are values he infact holds. This broader conceptionof autonomy can also easily accom-modate the nonindividualistic valuespatients from other cultures maybring into the clinic. With this viewof autonomy in place, minority pa-tients who value preserving and pro-moting their families’ interests abovemaking their own independent deci-sions can be given room to act on thisvalue. Furthermore, allowing patientsthe choice to follow a family-centereddecisionmaking style within the con-text of their own health care is ar-guably perfectly consistent with themedical profession’s standing com-mitment to personal autonomy.15

In short, with a little conceptualmaneuvering, individual autonomycan easily be made more family-friendly. Autonomy would by defini-tion be opposed to family concernsand some patients’ cultural values ifwe were to insist that autonomouspersons must act with just their ownlives and selfish interests in mind. But

there is no reason we must acceptsuch a narrow and egoistic definitionof autonomy. What is needed, there-fore, is a gestalt shift in our view ofindividual autonomy, from a focus onrugged individualism to an awarenessthat there exists a multiplicity ofhuman values on which autonomouspersons can act.

Recognizing the Importance ofAuthentic Values

Ibelieve this renovated conceptionof personal autonomy, with its

space for nonindividualistic valuesand family-centered medical deci-sionmaking, is on the right track. Itis, however, incomplete in one veryimportant respect. It does not includethe authenticity condition—the qual-ification, in rough and preliminaryterms, that those values which guidethe actions and decisions of au-tonomous persons must be authenti-cally “their own” and not the prod-ucts of wholesale indoctrination ormanipulation.16 This is not a radicallynew idea, of course; it has been artic-ulated in many well-known literaryand philosophical works, from Hux-ley’s Brave New World to J.S. Mill’s ar-guments about the subjection ofwomen, to Marx’s writings about falseconsciousness. Despite differencesamong their accounts, a common les-son these and other authors present isthat we must not always take people’svalues simply as given.

Autonomy theorists must take thiswarning seriously. Theories of auton-omy that ignore the authenticity con-dition are faced with the embarrass-ing problem of not being able to ruleout as nonautonomous those whohave been brainwashed or otherwisehad their values surreptitiously pro-grammed for them. This is an unac-ceptable outcome, since these casesfall under the general category ofwhat philosophers have called het-eronomy, that is, the circumstance of aperson’s acting on the laws, or values,of another.

Notice that this outcome cannotbe avoided merely by appealing to the


individual’s ability to reflect criticallyon her current values, since that abili-ty might itself be malformed. Inau-thenticity of the sort I am concernedwith here is notoriously difficult forpersons to self-diagnose and self-cor-rect. Indeed, this was one of Marx’sworries about false consciousness.Furthermore, the differences betweenautonomous and heteronomous per-sons can be difficult to detect from athird-person point of view, since thesetwo groups can happen to look andact the same. It is even logically possi-ble that both may be equally reflectiveand self-scrutinizing.

What remains to distinguish themin these cases is the authenticity con-dition. This additional stipulation re-quires us to look into the history ofeach individual. That is to say, wemust first know how a person’s valuescame to be acquired in order to deter-mine whether her actions and deci-sions that accord with her values aretruly autonomous—including herperformance of self-reflection. It is invirtue of the authenticity condition,then, that autonomy cannot be readoff a person’s actions straight away.

Admittedly, everything I have saidso far about authenticity may seem tosuggest precisely the sort of rugged in-dividualism I agreed we ought to letfade from our view of personal auton-omy. How can we say that a personhas authentic values in the requiredsense for autonomy without also pre-supposing a suspiciously individualis-tic ideal of the person, namely, thatone should strive to make one’s inher-ited values “one’s own”?

It is easy to see why some criticsmight raise these concerns, especiallyin light of what other philosophershave recently asserted about what Ihave been calling the authenticitycondition. Many autonomy theoristshave held that a person’s values arenot truly “hers” until she has filteredthem through a process of criticalevaluation.17 In other words, authen-tic values are said to have the distinc-tive feature of having been putthrough the test of detached self-ap-praisal, whereby the individual con-

siders which of her inherited values toretain, revise, or reject.

If this is what is required to satisfythe authenticity condition, then au-tonomy seems possible only for thosewho have learned to take on an inde-pendently minded attitude towardthe formation of their values. Thischaracter trait appears to embody aparticularly rugged individualism.One might imagine here a youngadult, in a moment of youthful rebel-lion, critically challenging the valuesshe has received from her parents andcommunity, like a Cartesian philoso-pher critically evaluating the epis-temic status of her beliefs during amoment of hyperbolic doubt.

Indeed, the chief fault of this viewof what authenticity requires is that itmust actually presuppose autonomy inorder to establish it. Insofar as wemaintain that a person’s having au-

thentic values is a necessary precondi-tion for her acting autonomously, anyview of authentic values that demandsthat they be self-given through aprocess of critical reflection must al-ready regard that person as au-tonomous. This explanation sends uson an infinite regress.18 We need amore tenable view.

An Alternative Approach

Rather than viewing authenticityas the result of a person’s critical-

ly reflective approval of her values, Ibelieve we should concentrate insteadon the social circumstances surround-ing her acceptance of these values in

the first place. To put the point an-other way, authenticity is not a matterof what a person does, but a matter ofthe social context in which she comesto have her values. Although an indi-vidual’s ability to think about what ishappening to her and how she isbeing influenced is an important partof being an autonomous person, itcannot stand alone as an adequatemeans of satisfying the authenticitycondition. We must begin with fac-tors that are “external” to the individ-ual’s mind and her critical processes ifwe are to avoid an infinite regress.

The factors I am thinking of herehave to do with social restrictions onthe options available for one’s effec-tive choice. I maintain that a person’svalues will fail the authenticity condi-tion if she accepted them and holdsthem because she has suffered seriousdeprivations of legitimate alternatives

and goods that remain open to othersin her social milieu. Her values will beauthentic only if they lack a causalhistory in this respect.

Three salient qualifications mustbe added to my approach: (1) Thesedeprivations must be caused by otherpersons and not purely by natural cir-cumstances, such as accidental dis-abilities and other randomly occur-ring misfortunes. (2) They must bedeprivations of choices and goodsthat are reasonably available to otherswho are no more able-minded andtalented than she. (3) They must notbe justly deserved. (I will discuss thisthird qualification more later.)

Rather than viewing authenticity as the result of a

person’s critically reflective approval of her values,

we should concentrate on the social circumstances

surrounding her acceptance of these values in the

first place. Authenticity is not a matter of what a

person does, but a matter of the social context in

which she comes to have her values.


These qualifications underscore akey difference between my account ofauthentic values and the prevalentview. According to the latter, a per-son’s having inauthentic values is lam-entable because they could preemptthe possibility that she acts au-tonomously. According to my view, aperson’s having inauthentic values islamentable not only for this impor-tant reason, but also because this per-son has been wronged. When we saythat a person’s values are inauthentic,we are not simply noting that theylack a certain characteristic—namely,their having been critically reflectedupon. Rather, we are registering anormative complaint about an injus-tice in that person’s life.19 On theprevalent view, an inauthentic personfails to live up to a philosophical idealof the individual as a critically self-re-flective being. On my view, the faultlies outside the person, falling insteadon the morally unjustified and restric-tive social circumstances under whichshe happens to live.

What makes this alternative ap-proach to authenticity especially no-table is the fact that the deprivationsthat produce inauthentic values canoccur quite openly. We do not have toimagine fantastic scenarios of wide-spread hypnosis in order to appreciatethe danger of developing inauthenticvalues. When people are unjustly de-nied access to alternative and reason-able goods over a long span of time,they normally learn to value thegoods that are feasible for them, evenif artificially limited. This is a survivalskill. It helps diminish the psycholog-ical dissonances that accompany in-justice. Inequalities of treatment be-come more bearable if one happens tovalue what one is able to do instead offruitlessly pining for what one cannothave.

Other commentators have re-marked on this complex psychologi-cal coping skill (although they do notexplicitly draw the connection to theauthenticity condition that I dohere).20 Economist and philosopherAmartya Sen, for example, has ob-served that most poor and deprived

women in rural India do not demandto be as educated and healthy as theIndian men around them becausetheir expectations and hopes havebeen adapted to fit the life they havealways known. What is striking aboutSen’s report is that the women hementions often accept as natural andappropriate gross inequalities betweenmen and women with respect tomany basic necessities, such as nutri-tion and health care. There is a sharpdisparity between Indian women’sself-reported subjective satisfactionwith their own level of health andtheir actual, very poor health statusrelative to men’s.21

Furthermore, these women helppreserve the unjust and sexist socialarrangements around them becausethey value giving preferential treat-ment to men and boys—they believethe decisions they make to maintainthese gender inequalities are impor-tant, and they experience feelings ofremorse when they fail to conform tothe expected pattern of behavior.22

The effect, as Sen notes, is that “acuteinequalities often survive precisely bymaking allies out of the deprived. Theunderdog comes to accept the legiti-macy of the unequal order and be-comes an implicit accomplice.”23 Yetit is not that these women are unusu-ally naïve and dupable; rather, theyare unsentimentally pragmatic. Theyhave come to value their way of lifebecause no alternatives remain rea-sonably open to them. Yet the factthat many of these women do notcomplain is no indication that theyare not deprived. As Sen explains, “Itcan be a serious error to take the ab-sence of protests and questioning ofinequality as evidence of the absenceof inequality (or the nonviability ofthat question).”24

Let me posit some general claims.Seriously deprived people have values.And seriously deprived people can berelatively content. Nevertheless, theyare wronged. Insofar as their actionsstem from inauthentic values, they areautonomous only in appearance. Ad-mittedly, not all seriously deprivedpeople react psychologically to their

unjust circumstances by developinginauthentic values; some can be defi-ant and rebellious relative to othersaround them. Yet, if the deprivationsare systematic enough, especially ifthey begin at an early stage of life, be-fore one’s critical capacities are ade-quately developed, people can be ha-bituated to view themselves as less ca-pable and deserving than those whoare privileged, and can subsequentlyvalue the ways of life that are most fa-miliar to them.

Much more can be said about thisapproach to authenticity than I havespace to provide here. Still, this abbre-viated account reveals some of its ad-vantages. Here are three.

First, it allows that many differenttypes of people are capable of meetingthe authenticity condition, not justdeep, critical self-evaluators. Peoplewho do not regularly inspect their ef-fective values at a meta-level (proba-bly most of us) can still be au-tonomous, on the condition that thevalues they act on have a causal histo-ry free of the sort of coercive influ-ences just mentioned.25 This is notsimply a convenient relaxation of theauthenticity condition. Nothing pre-vents people from questioning and re-vising their values throughout theirlifetimes; still, their “starter set” of val-ues, so to speak, must be authentic, asjudged by criteria that lie beyondtheir direct control, if they are to bedescribed as acting autonomously.

Second, by making authenticity amatter of the social context in whicha person’s values develop rather than amatter of an individual’s critical ap-praisal and choice, we not only avoidthe infinite regress, but also the com-munitarian critique that a person’svalues are not all completely subjectto her own choosing, as some radicalforms of liberalism seem to assume.Communitarians are probably rightthat we absorb many of our identity-constituting values from the commu-nity around us; we can still talk abouthaving authentic values in the sensenecessary for autonomy.

Third, this approach can help ex-plain why many values that people


tend not to question and critically in-spect—such as a person’s valuing heropportunities to enjoy artistic expres-sion or outdoor activity—are normal-ly considered authentic. Our pre-sumption of their authenticity mightbe partly justified by the belief thatthey probably did not arise as a resultof the individual’s having been un-justly denied alternative possiblegoods. Of course, such a presumptioncould perhaps sometimes be rebutted.But as long as one’s values are in factfree of unduly restrictive social con-straints and (perhaps) are in harmonywith their inborn talents and disposi-tions, they are authentic.

The Problem of Unjust Familiesand Traditions

Back, then, to the initial problem:many ethnically diverse patients

might prefer to transfer their deci-sionmaking authority to their familiesand may not want to be informed atall about their diagnoses and prog-noses. In fact, the very idea that pa-tients in the United States are expect-ed to understand their conditions andto play a significant role in their owntreatment decisions may be complete-ly alien to some.

Health care providers are facedwith a daunting task whenever thesepossibilities present themselves—amuch more daunting task than is im-plied by the response that providersshould just broaden their view of au-tonomy and try to satisfy their pa-tients’ expressed preferences to waiveinformed consent. It is hard tooveremphasize the complexities in-volved in this issue. Here are (mini-mally) the sort of considerations thatmust be taken into account. I proposethat an individual patient’s waiver ofinformed consent in the sort of caseswe have been considering is ethicallyacceptable provided that the follow-ing five conditions are satisfied.

1) In a private conversation withher health care provider, the pa-tient is made aware that she hasthe right to informed consent, and

that this right need not exclude herfamily’s involvement if she desiresit.26

2) She clearly expresses a prefer-ence to waive completely her rightto informed consent and is notpressured or bullied into doing soby her family or anyone else.

3) The patient’s value-driven desireto grant her family final decision-making authority is authentic, inthe sense required by the accountabove.

4) The family is prepared mentallyand emotionally to handle thenews of the patient’s condition (ifit proves serious) and is willing toassume the decisionmaking re-sponsibilities.

5) The family is well-motivated—that is, either the patient’s well-being or the common good of the

family is identified as the goal ofthe decision.

The first three conditions ensurethat the patient’s waiver is au-tonomous. The last two ensure thatthe family, just like any other nonpa-tient decisionmaker, will be an appro-priate surrogate authority, with thestipulation that the common good ofthe family may be included as a legit-imate aim of the decision.

Each of these five conditions couldbe explored further, but I will concen-trate on the third—the authenticitycondition. I argued that autonomouspersons must act on their authenticvalues—namely, on those values that

are formed and held under just cir-cumstances. When considering a pa-tient’s desire to transfer all decision-making authority to the family, wemay be tempted to assume that herwish is authentic in the requiredsense, especially if the patient appearsgenuinely happy and eager to waiveher right to informed consent in thismanner. That is, we may tend to as-sume that the patient’s effective valueswere not malformed and that shedoes not now suffer serious depriva-tions of choice available to othermembers of her family.

In our pre-reflective thought aboutthe family, it is easy to slip into anidealistic mode in which we envisionthe family as a cozy sphere of mutualrespect and concern wherein the in-terests, opinions, and happiness of allmembers are taken seriously by all.But of course this ideal of the familysimply does not hold true in manycases, and it can be dangerous to leavethis happy vision unchallenged. The

reality is that many families today,both Western and non-Western, areunjustly structured: they operateunder morally questionable powerdynamics and traditions (or interpre-tations thereof ) that fail to honorequally the inherent moral worth ofeach member. Injustice in the familycan range from physical and emo-tional abuse to less tangible injustices,such as the family’s acceptance of sex-ist attitudes about the proper role ofwomen in society.27 Simply put, notall family members accept the viewthat the well-being of each membermatters equally.28

Plainly the family is crucial formoral education. Children model

It is easy to envision the family as a cozy sphere of

mutual respect and concern wherein the interests,

opinions, and happiness of all members are taken

seriously by all. But of course this ideal

simply does not hold true.


their behavior according to what theysee around them. It is within the fam-ily environment that they first learnhow to treat others justly or unjustly.It is also where they first form theirattitudes toward others in relation tothemselves. As Mill once put it, boyswho are raised with the belief thatbeing born male instantly makesthem more valuable than femalescome to develop “a sublime and sul-tan-like sense of superiority” overwomen.29

The four aspects of the family Inoted elaborate on this thought: (1)families are where many cultural tra-ditions are passed to the young; (2)families cultivate a familial characterby the type of practices that predomi-nate within them; (3) families arewhere many people develop theirsense of identity and self-worth; and(4) families are harbors for love andaffection. A family could be said tohave an unjust familial character if itstraditions fail to respect the inherentmoral worth of each member equally(an observation connected with thefirst two aspects of the family). Anunjust family is a school for injustice.As Martha Nussbaum succinctly ex-plains, “the family reproduces what itcontains.”30

If the family’s unjust practices pre-ponderate and are persistent, they canhave (given the third aspect of thefamily) two significant effects on theyoung. Those who are privileged bythese practices may develop a “sultan-like” self-concept, while the disadvan-taged may develop a self-concept in-flected by self-doubt and over-depen-dence on the kindness of others. Theimplication of the fourth aspect of thefamily is that the effects of injusticecan occur under a shelter of love, har-mony, and affection. People can loveone another even when they are in-volved in unjust relationships. Andwhile it may not be a healthy form oflove, those who know little else mightstill experience a strong shared senseof emotional attachment. And thiscan itself help generate a recurring in-justice. As family therapists are wellaware, people who come from unjust

birth families often find partners whowill repeat the same power dynam-ics.31

Now the ingredients are there forthe development of inauthentic val-ues. Of course inauthenticity is notinevitable, but it is highly likely insuch family environments. The depri-vations that produce inauthentic val-ues can be especially difficult to resistif there is no reasonable way for oneto escape these circumstances, eitherthrough divorce or by simply fleeing.Truly vulnerable family members nor-mally do not have opportunities toinvest in their own human capital tomake their economic survival outsidethe unjust family a comfortingprospect. But perhaps the most signif-icant barrier to leaving unjust familyenvironments is that the person maybe unable to see the treatment as un-just.

Inauthenticity is especially likelywith patients who occupy subordi-nate positions and have little or norecognized decisionmaking authoritywithin the family.32 And althoughsuch concerns need not arise onlyabout female family members, histor-ically, of course, women have beensubordinated to others both in theWest and in the non-Western world.

Of course, I do not mean to sug-gest that a patient (either Western ornon-Western) must always be actinginauthentically when she decides towaive her right to informed consent.A recently immigrated patient, for ex-ample, may have a variety of reasonsfor making such a decision, not all ofthem morally suspicious. She maycorrectly believe that other familymembers are simply more knowl-edgeable than she about the matter,and she may prefer to trust their judg-ment. She may also prefer to entrusther decisionmaking authority to afamily member who has a better com-mand of the English language andwho is more comfortable interactingwith Western physicians. On theother hand, we may doubt whether awaiver is morally legitimate if the pa-tient simply believes that she does not

have the basic right to make decisionsfor herself.

Remaining Difficulties

Some philosophical and practicaldifficulties need at least to be

flagged. First, one might ask, how arehealth care providers supposed toknow whether a patient’s request todefer to her family’s medical decisionsmeets the authenticity condition?How can providers gain access to thesort of personal, historical informa-tion necessary to make this determi-nation without being unduly prying,or worse, overly assuming? Getting toknow the circumstances of a patient’svalue formation is more aptly a taskfor a qualified psychoanalyst than fora health care clinician, particularlygiven the severe time constraints in-volved in most clinical provider-pa-tient interactions.

This epistemic problem can per-haps be partly resolved by careful in-vestigation of some of the other con-siderations that are necessary for anethically acceptable waiver. The fiveconditions are interconnected in sucha way that an inquiry into one mightprovide some insight into another. Inascertaining the family’s goals formaking the patient’s medical deci-sions and understanding the family’sactual decisionmaking style, for ex-ample, providers might be able tosense whether the family has an un-just familial character.

But suppose it could be deter-mined that a patient’s waiver isnonautonomous because she is oper-ating with an inauthentic value. Whatthen? Here’s a second problem. Bydenying her wish, providers would beclearly frustrating an adult patient’sexpressed desire, and perhaps a casecan be made about the wrongfulnessof just that. Even if patients hold in-authentic values, they may also bequite content. Do we, in Rousseau’smemorable phrase, “force them to befree”?33 It is impossible to imaginehow providers could suddenly man-age to lift the patient’s false conscious-ness and subsequently offer her ade-


quate social support so that she mayfreely escape her unjust family envi-ronment (assuming she is not beingoutright abused).

The temptation in many of thesecases will be to grant the waiver, andthere is at least one interesting philo-sophical consideration that may sup-port this course. If the patient’s deci-sion to waive her decisionmaking au-thority is truly nonautonomous, thenshe may also be largely incapable ofautonomously making medicalchoices for herself if denied the waiv-er. Even after one’s unjust social con-straints are removed, either temporar-ily or permanently, one may still feela habituated inner resistance to mak-ing important choices for oneself, atleast anytime soon. A case like thismight call for others—not unjustfamily members—to make decisionsfor the patient’s benefit, allowing herto participate in the decision processwhenever she is willing to do so. Wemust admit, however, that we wouldnot be acting here out of our com-mitment to autonomy in any philo-sophically accurate sense, but fromsomething else, perhaps beneficence.

Also, doubts may be raised aboutwhether our hypothetical nonau-tonomous patient would truly under-stand what it means morally to have aright to informed consent—the firstcondition I identified above for anacceptable waiver of informed con-sent. Will a quick conversation withher physician impress upon her theunderstanding that, as a humanbeing, she has the moral right tomake decisions for herself, and thatthis right need not be exercised at theexclusion of her family’s morally le-gitimate interests? Perhaps a providershould just act on good faith that herpatient’s self-reported understandingof this right is adequate, if only forthe reason that the provider has aninterest in not sending a misleadingmessage that she does not trust thepatient’s own judgment. After all, theprovider probably would not be ableto detect so early in the interactionwhether the patient is operating with

inauthentic values and an obeisantconception of herself.

I believe this is an unknown thatcan be better answered after theprovider gets acquainted with thefamily and understands better its in-ternal dynamics. Maybe a second pri-vate conversation with the patientwould be in order, although theprovider’s time constraints mightmilitate against that.

Finally, a crtic may worry that thegeneral line of argument I have devel-oped is morally imperialistic, insofaras it suggests that all persons from allcultures have a right to personal au-tonomy. There are, however, seriousconceptual limitations to this argu-ment against me. I agree that moralimperialism is wrong. Furthermore, Isubmit that moral imperialism iswrong precisely because it forcefullyoverrides the right people have to de-cide for themselves how they aregoing to judge what is moral. Inshort, it violates their right to act bythe lights of their own values —whatI have been calling autonomy. Aslong as the critic and I agree on thisbasic point, it is conceptually inco-herent for him to appeal covertly tothis right in arguing against my de-fense of it. Of course, the critic mayobject to my interpretation of the au-thenticity condition, but he needsthis condition as I have described itin order to make his conception ofautonomy complete.

In summary, the ethical issues ofthe authenticity condition are ex-tremely complex. While some guid-ance may be had from the five condi-tions I laid out for an ethically ac-ceptable waiver of informed consent,actually meeting these requirementsis a formidable task. Yet it does notseem overly fastidious to insist thatthe authenticity condition be bornein mind. If health care providers aretruly committed to the principle ofrespect for persons and the value ofpersonal autonomy broadly defined,they must take seriously the complex-ities of authenticity.

References

1. No convenient term accurately picksout the subclass of patients I wish to discussin this article. I hesitantly use the terms“ethically diverse patients” and “minoritypatients” to refer to those who are typicallyregarded in the bioethics literature as hav-ing a greater cultural tendency to defer totheir families’ choices concerning their ownmedical treatments. But a patient need notbe an immigrant or an ethnic minority tofollow a familial norm such as this, and notall ethnic minorities adhere to a family-cen-tered decisionmaking style.

2. L.J. Blackhall et al., “Ethnicity and At-titudes toward Patient Autonomy,” JAMA274 (1995): 820-25. These figures werecompiled from interviews with 800 subjectsat 31 senior citizen centers in Los Angeles.The age and gender of the hypothetical pa-tient were not specified in the questionnairefor the respondents, thus the importancethese details normally have for traditional,non-Western ways of thinking about thegood for persons was obscured.

3. See L.O. Gostin, “Informed Consent,Cultural Sensitivity, and Respect for Per-sons,” JAMA 247 (1995): 844-45.

4. Blackhall et al., “Ethnicity and Atti-tudes toward Patient Autonomy,” 825.

5. For example, the courts have deter-mined that doctors are not liable for failureto disclose resulting from a patient’s specificdemand not to be informed: Putensen v.Clay Adams Inc., 91 Cal. Rptr. 319, 333(1970); Cobbs v. Grant, 104 Cal. Rptr.505, 516 (1972); Arato v. Avedon, 858 P2d598, 609 (Cal SCt 1993). For an interest-ing and sensitive discussion of how physi-cians might ascertain a patient’s level ofwillingness to be informed, see B. Freed-man, “Offering Truth,” Archives of InternalMedicine 153 (1993): 572-76. For a recentapplication of Freedman’s view to end of lifedecisionmaking by minority patients, see E.Hern, Jr. et al., “The Difference that Cul-ture Can Make in End of life Decisionmak-ing,” Cambridge Quarterly of HealthcareEthics 7 (1998): 27-40.

6. Technically, a waiver of informed con-sent involves two waivers—the waiver ofthe right to know and the waiver of theright to decide. For all practical purposes,however, a waiver of the right to know ef-fectively amounts to a waiver of one’s rightto decide, since without information abouthis diagnosis or prognosis, a patient cannotmake a meaningful decision about treat-ment.

7. S. Benhabib, “Cultural Complexity,Moral Interdependence, and the Global Di-alogical Community,” in Women, Culture,and Development: A Study of Human Capa-bilities, ed. M.C. Nussbaum and J.Glover


(Oxford: Clarendon Press, 1995), 235-55 at240.

8. Our common assumptions about cul-tural homogeneity are further challenged bythe observation that—historically—culturalbeliefs, practices, and interests have largelybeen determined and represented by men inpositions of power, often at the expense ofthe group’s marginalized members. See Y.Tamir, “Siding with the Underdogs,” in IsMulticulturalism Bad for Women?, ed. J.Cohen, M. Howard, and M.C. Nussbaum(Princeton, N.J.: Princeton University Press,1999), 47-52; and X. Li, “Gender Inequali-ty in China and Cultural Relativism,” inWomen, Culture, and Development, ed.Nussbaum and Glover, 407-425.

9. The concept of the family is both con-troversial and open-ended. Because my fol-lowing arguments do not depend on anysingle conception of the family, however, Iwill use the terms “family” and “familymembers” in their most common senses.

10. I borrow this apt phrase from J.L.Nelson’s “Taking Families Seriously,” Hast-ings Center Report 22, no. 4 (1992), 6-12, at8-9.

11. S. Minuchen, Families and FamilyTherapy (Cambridge, Mass.: Harvard Uni-versity Press, 1974).

12. M. Sandel, Liberalism and the Limitsof Justice (Cambridge: Cambridge Universi-ty Press, 1982), 52-55; A. MacIntyre, AfterVirtue: A Study in Moral Theory (London:Duckworth, 1981), 204-205. A similarview of the person is outlined in J. Hardwig,“Is There a Duty to Die,” Hastings CenterReport 27, no. 2 (1997): 34-42. For a dis-cussion of communal views of personhoodfound in central Africa and Japan, see W.De Craemer, “A Cross-cultural Perspectiveon Personhood,” Milbank Memorial FundQuarterly 61, no. 1 (1983): 19-34.

13. J.L. Nelson, “Taking Families Seri-ously,” 7-8.

14. E. Pellegrino, “Is Truth Telling to thePatient a Cultural Artifact?” JAMA 268(1992), 1734-35. A similar viewpoint isechoed in T.A. Mappes and J.S. Zembaty,“Patient Choices, Family Interests, andPhysician Obligations,” Kennedy Institute ofEthics Journal 4, no. 1 (1994) 27-46. Seealso Gostin, “Informed Consent, CulturalSensitivity, and Respect for Persons,” 845;Blackhall et al., “Ethnicity and Attitudes to-ward Patient Autonomy,” 825; and Hern,Jr., et al., “The Difference that Culture CanMake in End of Life Decisionmaking,” 36-37.

15. The notion of family-centered deci-sionmaking is ambiguous. It could mean ei-ther that the good of the entire family is pre-scribed as the aim of the patient’s treatmentdecision (the family-as-beneficiary view) orthat the family is customarily taken to be an

agent that makes decisions on the patient’sbehalf (the family-as-decisionmaker view),or some combination of both. I assume thefamily-as-decisionmaker view, but my argu-ment does not depend on any one interpre-tation of family-centered decisionmaking.For the ethical complexities involved infamily-centered medical decisionmaking,see my “Conceptions of Family-CenteredMedical Decisionmaking and Their Diffi-culties,” Cambridge Quarterly of HealthcareEthics, in press.

16. For a more detailed discussion of theauthenticity condition, see my “AuthenticValues and Individual Autonomy,” TheJournal of Value Inquiry 35, no. 2 (2001):195-208. The notion of authenticity I aminvestigating should be distinguished frommore complex interpretations of this termthat have been advanced by existentialistschools of thought, which broadly conceiveauthenticity as either an ideal of humanflourishing or a teleological theory of theself.

17. See J. Feinberg, “Autonomy,” in TheInner Citadel, ed. J. Christman (Oxford:Oxford University Press, 1989), 27-53; S.Benn, A Theory of Freedom (Cambridge:Cambridge University Press, 1988); R.Young, “Autonomy and Socialization,”Mind 89 (1980): 565-76; and R. Young,Personal Autonomy: Beyond Negative andPositive Liberty (New York: St. Martin’sPress, 1986).

18. In addition to this problem, a stongcritical reflection requirement would set toohigh a standard for autonomy; thus mostpersons would not qualify as autonomous.See R. Faden and T. Beauchamp, A Historyand Theory of Informed Consent (Oxford:Oxford University Press, 1986), 262-66. Seealso my “Authentic Values and IndividualAutonomy,” 199-200.

19. Gerald Dworkin’s conception of indi-vidual autonomy is sensitive to the sort ofconcerns I am advancing here, although Ido not believe his procedural independencerequirement can quite fully capture thisnormative point. See Dworkin, “Autonomyand Behavioral Control,” Hastings CenterReport 6 (1976): 23-28.

20. A similar view is found in J. Elster’sdiscussion of adaptive preferences—prefer-ences that arise when people unconsciouslydowngrade their inaccessible options. Elsterdoes not give injustice a central role in thedefinition, however. See Elster, Sour Grapes(Cambridge: Cambridge University Press,1983).

21. A. Sen, Commodities and Capabilities(Amsterdam: North-Holland, 1985).

22. A. Sen, “Gender Inequality and The-ories of Justice,” in Women, Culture and De-velopment, 259-73.

23. A. Sen, “Gender and Co-operativeConflicts,” in Persistent Inequalities: Womenand World Development, ed. I. Tinker (NewYork: Oxford University Press, 1990), 126.

24. A. Sen, “Gender and Co-operativeConflicts,” 126.

25. Having authentic values is a necessarybut not sufficient condition for autonomy.Practical rationality, a mature level of under-standing, and an epistemic sensitivity to theavailable facts are other necessary condi-tions.

26. The Supreme Court defines a waiveras a voluntary and intentional relinquish-ment of a known right: Miranda v. Arizona,384 U.S. 436, 475-76 (1966). Thus inorder to waive a right to informed consent,the patient must first know that she has it.This right includes both the right to be in-formed about her medical condition andthe right to opt out of treatment altogether.

27. S. Okin, Justice, Gender, and the Fam-ily (New York: Basic Books, Inc., 1989); X.Li, “Gender Inequality in China and Cul-tural Relativism,” in Women, Culture, andDevelopment, ed. Nussbaum and Glover,407-25, and M.M. Valdes, “Inequality inCapabilities between Men and Women inMexico,” in Women, Culture, and Develop-ment, ed. Nussbaum and Glover, 426-32.

28. For a discussion of the relationshipbetween conceptions of justice and the ideaof moral equality, see R. Dworkin, TakingRights Seriously (London: Duckworth,1977).

29. J.S. Mill, The Subjection of Women,ed. S. Okin (Cambridge: Hackett Publish-ing Co., 1988), 87.

30. M. Nussbaum, Women and HumanDevelopment (Cambridge: Cambridge Uni-versity Press, 1999), 243.

31. Minuchen, Families and FamilyTherapy; and D.G. Dutton, The DomesticAssault of Women: Psychological and CriminalJustice Perspectives (Newton, Mass.: Allynand Bacon Inc., 1988).

32. This point is also mentioned brieflyby F. Moazam, “Families, Patients, andPhysicians in Medical Decisionmaking: APakistani Perspective,” Hastings Center Re-port 30, no. 6 (2000): 28-37, at 34.

33. J.J. Rousseau, The Social Contract(Baltimore: Penguin Books, 1968).

waiver of informed consent, cultural sensitivity, and the problem of unjust families and traditions

Documents