protecting intimate relationships: children's competence and children's rights

Protecting Intimate Relationships: Children's Competence and Children's RightsAuthor(s): Ferdinand SchoemanSource: IRB: Ethics and Human Research, Vol. 4, No. 6 (Jun. - Jul., 1982), pp. 1-6Published by: The Hastings CenterStable URL: http://www.jstor.org/stable/3564335 .

Accessed: 12/06/2014 18:56

Your use of the JSTOR archive indicates your acceptance of the Terms & Conditions of Use, available at .http://www.jstor.org/page/info/about/policies/terms.jsp

.JSTOR is a not-for-profit service that helps scholars, researchers, and students discover, use, and build upon a wide range ofcontent in a trusted digital archive. We use information technology and tools to increase productivity and facilitate new formsof scholarship. For more information about JSTOR, please contact [email protected].

.

The Hastings Center is collaborating with JSTOR to digitize, preserve and extend access to IRB: Ethics andHuman Research.

http://www.jstor.org

This content downloaded from 185.44.78.113 on Thu, 12 Jun 2014 18:56:32 PMAll use subject to JSTOR Terms and Conditions

http://www.jstor.org/action/showPublisher?publisherCode=hastings

http://www.jstor.org/stable/3564335?origin=JSTOR-pdf

http://www.jstor.org/page/info/about/policies/terms.jsp


|r

A?evewo

HmanSujet

Iesar-

Volume 4 Number 6 June/July 1982

Children's Competence and Children's Rights by Ferdinand Schoeman 1

CASE STUDY: How an Investigator and an IRB Cooperated in Research Design by Joseph R. Benotti and Thomas A. Shannon 6

Random-Sampling: A Modest Proposal for Reforming IRB Review by Arthur L. Caplan 8

According to Protocol by Robert J. Levine 9

LETTERS 9

ANNOTATIONS 11

PROTECTING INTIMATE RELATIONSHIPS:

Children's Competence and Children's Rights by Ferdinand Schoeman

DHHS proposed regulations for research involving children provide this statement of their purpose (proposed Section 46.402):

Children are normally legally incapa- ble of consenting to their own par- ticipation in biomedical or behavioral research and may also be unable to comprehend fully the consequences and risks which might be involved .... This subpart provides ad- ditional safeguards for the protection of children involved in ... research. These statements reflect a view of

what it is about the child that requires special attention by the IRB as it re- views proposals to involve children as research subjects. In this essay, I shall argue that the IRB, by excessive or ex- clusive concentration on the child's au-

tonomy and comprehension, may take actions that are detrimental to other even more important values.

Family autonomy and children's rights issues involve subtle empirical and moral problems. The empirical issues relate to children's judgmental capacities in both general and specific contexts. The moral issues are wide- ranging and relate to some of the most fundamental issues in moral philosophy. While the impetus for much of the social interest in children's rights issues is the depressing incidence of child abuse and neglect, rethinking of social relationships and a concern for social justice have also contributed to the intensity of the debate and the range of alternatives proposed.

Legal and social institutions are in- creasingly integrating children's expressions of their preferences into the catalogue of interests that the institu-

tions consider meaningful. This change reflects a reevaluation of the child's social status as something more than an extension of parental interests. While this reevaluation is commendable, it calls into question the place of the child in the family--the child's primary environment. I want to focus on the relationship between parents and children, especially pre-adolescent and early adolescent children.

I shall develop these points: First, there is apparently good evidence that the judgmental capacities of children through age fourteen are biased in ways that are significant and germane to autonomy issues; however, such biases have no immediate public policy implications since we lack a precise theory supporting any particular capacities-baseline as a precondition for full autonomy status. Second, the terms in which the autonomy/paternal- ism debate have been argued have been misguided from a moral perspective in assuming that the only relevant issue is children's judgmental capacities. Third, orienting the way we think about the morality of intimate relationships in ways more sensitive to the essential personal meaning of these relationships helps us see that the protection of relationships, and not just the issue of judgmental capacity, is an important factor to take into account when considering'the moral status of the child. We achieve this reorientation by focusing more on ideals of relationships than by focusing on the rights of children and the duties of parents. This refocusing has public policy implications in that on certain empirical as- sumptions it lends support to treating families as private, autonomous, and responsible institutions to be interfered with only when imminent serious danger to one of the members becomes publicly manifest.

Children's Judgmental Capacities

While there is considerable contro- versy over the question of whether children's needs or children's autonomy ought to predominate in the making of social policy, it is generally agreed that this question is ultimately to be settled by discovering which emphasis better promotes children's interests. Those who advocate equal rights for children speculate that the emancipation of children will benefit children.1 Those who stress children's needs deny this. I wish to show that even if the factual issue of children's interests were re- solved, important moral questions would remain.

Though liberal political theorists Ferdinand Schoeman is Associate Professor of Philosophy, University of South Carolina.

1

A publication of The Hastings Center, Institute of Society, Ethics and the Life Sciences, 360 Broadway, Hastings-on-Hudson, NY 10706 @1982



MY0 0

DY~3

2

place a high value on individual lib- erty, they tend to think that it is important to save people from the consequences of their own immaturity. While this attitude surely dominates our thinking about the moral status of children, it is at times applicable to adults as well. But it is important to differentiate in this context immature behavior from immature capacities. While adults often act immaturely, this type of behavior does not typically stem from diminished capacities. Any- one in a position to act maturely is also in a position to act immaturely. So we should formulate the liberal position as follows: it is important to protect people from the significant deleterious consequences of their own immature capacities, but not necessarily from the consequences of their own immature behavior.

Thus, from a liberal perspective, there is at least a necessary condition on the exercise of autonomy rights: provided that the domain of choice is one in which serious harm may result to the acting agent or to others as a result of bad choices, agents have autonomy rights only if they have the relevant mature capacities.

Applying this result now to children aged nine through fourteen, we can ask: what is known about their judgmental capacities? In the writings of developmental psychologists one finds relatively consistent evidence that there is a correlation between age, on the one hand, and judgmental capacities on the other; that is, someone at- tuned to basic noncontroversial aspects of logical reasoning, moral reasoning, and prudential reasoning would find systematic shortcomings in the reasoning processes of the child. These differences are age-related and bear on the adequate functioning of the individual.2

Recognition of developmental differences does not entail, however, that adults are wholly rational or unbiased in their judgments. Recent studies, summarized by Richard Nisbet and Lee Ross in their book Human In- ference,3 catalogue the myriad ways in which adults-even intelligent and ed- ucated ones-systematically make errors of judgment, especially in interpreting the relevance of new information. Apparently not just children, but adults too, have difficulty in integrating all the information that is relevant to a decision. But again we must distin- guish between capacities and perform- ance and between differences in per- formance levels. Adults systematically err in judgment. But many such errors are correctable and explainable to

adults because the basic capacity to appreciate the error as error is present in the adult to a higher degree than it is in the adolescent. According to the developmental psychologist, however, the errors involved in adolescent and preadolescent thinking are not in general correctable or comprehensible to the agent.

Even though we acknowledge that judgmental capacities are relevant to recognition of rights to self-determina- tion, we don't know, short of the grossest incompetence, what exact level of incompetence should be related to cutting off specific rights. Whatever level is chosen will be selected on the basis of various factors in addition to the empirical ones psychologists can inform us about. Other factors will include the society's tolerance of risk and the overall social context of the decision.

Some other issues besides judgmental capacities are relevant to children's rights issues. First, one might argue that independent of abstract capacities children generally lack the experience to judge sensibly certain major kinds of issues. It may be that one reason children do not have the requisite experience, if in fact they lack it, is that their social status shields them from it. On the other hand, it may well be that the requisite experience can't be packed into children just by giving them more of it earlier. Some theorists even suggest that the particular cognitive structure of children at various stages radically affects how the child experiences the world so that much of what we call experience is theoretically as well as practically inaccessible to children.4

Second, there is the question of potential. Perhaps even if children by a certain age are competent enough in some areas to be accorded autonomy status such recognition would impede potential development in many other areas. While a child at age fourteen may be in a position to manage mini- mally, without the pressures of such independence the child may develop further and be eventually in a position to flourish as an adult. The child as a person may benefit more in the long run as a result of temporary less-than- full status. It is difficult to compare benefits and burdens at one stage of life with those at another in assessing whether certain lost opportunities are worth the costs.5 But we can still acknowledge the basis of a rationale for distinguishing between a normal adolescent and a retarded adult even though both perform slightly above some threshold level of competence.

We may still think it legitimate to treat the adolescent differently from the retarded adult because there are developmental potentials that can be nourished in the child that cannot be enhanced in the adult.

Intimate Relationships

Thus far I have discussed the issue of children's autonomy rights in the context of comparisons between children's and adults' capacities and potentials. But just how decisive is the factor of competence in determining the child's legal and moral status? Does it immediately follow from adequate competence that the law ought to treat juveniles as adults in all respects? Nearly all those who address children's rights issues have adopted this as- sumption. Writers typically treat children's rights issues as if they could be conclusively settled by proof of competence or incompetence. Competence is treated generally as not just a necessary condition for entitlement to adult status but as a sufficient condition as well-sometimes with the provision that such recognition would be practically enforceable.

But it seems implausible to assert that the mere possession of competence to act in a certain domain should suf- fice for having a right to act. For in- stance, while I have the competence to vote in Australian elections and work in Cuban factories, I do not have the right to do either. Incompetence is a special ground qualifying the relevant rights. Competence is far from the es- sence of rights in either intimate or social contexts.6

What else besides individual capacities might be morally relevant to the recognition of rights? As we have seen, primary emphasis has been placed on the presence or absence of judgmental capacities, and this in turn is thought to promote one of two other desiderata: respect for a person's autonomy or individual worth on the one hand and maximization of individual interests on the other. Contemporary Anglo- American social and moral philosophy have tended to treat these two consid- erations as exhaustive of the standards for evaluating social and legal institutions. The qualities of persons empha- sized in this tradition have either been the rights of persons or their needs and interests, individualistically conceived. With this emphasis, it is no surprise that the kinds of relationships explored have been essentially abstract or impersonal in character. Individuals have been conceived in their role as at most circumstantially related to others; i.e.,



as beings in a position to affect the overall well-being of one or more others, or as beings in a position to affect the autonomous status of others. Since the focus has been individualistic, the relationships envisioned have either been of an impersonal character or within the realm of the individual's private life and as such not open to moral or social analysis or scrutiny.

This preoccupation with impersonal relationships has had certain unfortu- nate consequences. It has meant that intimate relationships-for example, friendship and family relationships-- have been either virtually ignored or, even worse, treated as if they were a species of impersonal relationships. It has meant also that efforts to discuss these intimate relationships from a moral perspective confront a vocabu- lary and habit of professional thinking that seem quite ill-suited for the task. Rather than emphasizing the boundaries and distinctions of persons, one may wish to explore and emphasize the identification with others, the mingling of selves, the mutual incorporation and reorientation of another's good-facets of relationships that constitute intimacy.

Our intimate relationships have a moral integrity even though their primary aim is not to promote the dignity, or to respect the boundaries, of others. A person's roots in others are one of the primary factors that give people meaning in their lives. Such meaning is not principally a function of the promotion of rights or general well-being of others but rather something that has a manifest and independent worth. In suggesting that intimate relationships have independent meaning and moral integrity I am not denying that they serve individual interests. The notion of an individual interest is too loose to be able to say with confidence that it is not served by intimacy. I only claim that we can recognize a worth in such intimacy independent of a weighing of our interests. We do not always value a relationship with another because we see it as promoting either our interests or rights or those of another. Fre- quently we could more easily try to cut off a relationship than suffer with someone close to us or because of someone close to us. But this move wouldn't represent the type of person in relationships we would want ourselves to be.

The Ideal Parent

Besides rights and interests other moral dimensions need exploring.7 Such dimensions can clearly affect what our duties are in connection with

the rights and well-being of abstractly related others, but not in ways that have been systematically explored.s In the absence of such an inquiry we cannot presume that autonomy will place first in comparison with these other dimensions.

One possible means of providing an alternative moral theory, one that is sensitive to perceived lacunae in the standard approaches, is to think of roles and relationships as they emerge in ideal pictures or portrayals. People look to an ideal-as revealed in stories, traditions, myths, and literature-as a basis for guiding themselves in their various relationships. Such ideals set a standard for psychological as well as for behavioral evaluation. They set a standard for sensitivity to issues that enlighten judgment and feeling. From the perspective of such ideals actual relationships can be evaluated along different dimensions for proximity to the ideal.

There are two distinct moral traditions with which this proposal may be compared. First, in the Aristotelian tradition the idea of virtue predominates in making moral assessments; rules are taken as only more or less accurate pre- scriptive norms. Here, the primary moral objective is to act as someone with a certain kind of character does, and eventually to become a person with such a character, incorporating motivational, emotional, and behavioral dimensions. Second, in a nonra- tionalistic ethical tradition stories or sayings are assumed to resonate within the person and bring moral sensitivity to the behavioral surface.

For most persons an ideal of the parenting role will include expressions of caring, of mutual identification, of nur- turance, etc. While the picture of the role will include some specific duties and prohibitions, behavior and emo- tion will essentially fuse.

Some writers on children's rights point out that the parent has conflict- ing interests: first of all there is agency on his or her own behalf; second, there is agency as promoter of the interests of the child, and third, agency as promoter of the family as a unit. What hap- pens, these writers ask, when these interests conflict? Most parents iden- tify themselves as parents in the sense that conflicts between these roles are perceived as internal conflicts. In other words, the conflict is not perceived as a conflict between something personal and something abstract and alien, which has only some remote claim to his or her attention. Each of these per- spectives is personally motivating for the parent as a person. This is the self-

image that it is important to maintain if we wish to support intimacy. Focus- ing on the rights and interests of children versus those of parents is probably not a good strategy for accomplish- ing this.

Two salient features of this ideal picture theory of moral evaluation sepa- rate it from the rights and duties orientation of moral philosophy as generally perceived. First, one might think that there is something that is too full and complex about intimate relationships to be dealt with adequately in the inevitably legalistic terms in which rules and rights operate. Second and more important, talk about ideal pictures includes extensive emotional and motivational components in ways rules and rights systematically obfuscate.

To see the significance of this latter point, let us begin with the perspective of a parent. It would not be realistic to think of parents as motivated to have or maintain children because they thereby gain a new opportunity to respect someone's rights or promote someone's interests. These factors would not constitute for the parent significant dimensions of why it is important to them to be parents. Analo- gously, from the perspective of a child only part of what is important about the family is that it promotes his or her interests, or provides a context in which he or she is respected as a person. What is probably most important for both parents and children is the presence of understanding, trust, secur- ity, support, reciprocal identification, shared values, connected souls. These factors, if present, involve emotional attitudes and reasons for acting not well appreciated by those restricting their discussion to behavioral norms involving rights and maximization of interests.

It is important to highlight here a difference in ways of thinking. Because of the nature of intimacy it is not just behavior of certain sorts that we want to promote. Rather it is behavior motivated by caring attitudes and emotional involvement. A parent can be good to a child without loving the child and the child can understand this and be deeply scarred by it. We are seeking to provide not just a service benefiting children, but rather an attachment. While the most that talk of rights and rules can achieve is the provision of some sort of abstract benefit or service, it is the emotional attachment that is crucial.

Michael Rutter, in a recent article, provides one example of this general point. In his words:

In order to study the possibly protec-

June/July 1982

S



=0L~

4

tive effect of one good relationship, we focused on children who were liv- ing in severely quarrellsome, discor- dant, unhappy homes. From these we isolated children who had a good relationship with one parent - de- fined in terms of both the presence of high warmth and absence of severe criticism. These children were then compared to those who did not have a good relationship with either parent. We found that a good relationship did indeed provide quite a substantial protective effect. Of the children with a good relationship only a quarter showed a conduct dis- order, compared with three-quarters of those lacking such a relationship.9 While a child needs many services,

few can count to the same extent as an important relationship. Yet it is just this intimacy that institutions and agencies cannot provide. Only persons can provide it. And even in the case of persons, this intimacy cannot be provided as part of a job or profession. If intimacy is to emerge between persons, it will not be the result of any court- ordered, or legally or administratively required, conduct. This limitation, if you want to call it that, has important policy implications. It means that we have to capitalize on those contexts in which intimacy naturally arises between persons and try to minimize those forces that undermine people's sense of the importance of personally caring.

Say a child is in urgent need of a cornea transplant to avoid blindness. No one would say that the child has a right to a cornea from one of his or her parents. Also, suppose that someone else is in similar need of a cornea and that the child's father makes his cornea available to the stranger, but not to his own child. We would all judge there to be something morally amiss here, but the reason cannot be because the child's rights were violated or because overall social interests were not thereby well served. We can sensibly imagine that becoming sighted again is equally important to the child and to the actual recipient of the cornea. Quite straight- forwardly, it would seem as if the father is not being a good parent because he is not sensitive to his special relationship with his child if, other things being equal, he is not giving preference to his own child's needs.

One of the requirements of an adequate moral theory is that the various sentiments that are reasonably felt as morally grounded are acknowledged as such from within the theory. Morally possible answers to problems must be seen to have moral force, even if not de-

cisive force. We can compare theories for adequacy by focusing on a case where the standard approaches that stress rights or child's interests as the basis and limit of parental prerogative would result in a practical decision that is different from a morally appre- ciable decision that would result from the approach fostered here.

Given the intricate connection and interdependence of interests of persons within families it is not very easy to come up with unambiguous situations-situations in which we can defi- nitely exclude various motivations from being operative. But consider a situation in which twins are born to a family that already includes children. After two or three months it becomes clear that one of the infants needs a bone marrow transplant to survive. The only possible donor, as it turns out, is the infant's healthy twin. Suppose further that the removal of some marrow from the healthy twin involves more than discomfort; it involves some small risk of serious complications for the healthy twin. Is it legitimate, morally speaking, for the parents to consent to the marrow transplant?'0

If the transplant is not performed and only the healthy twin survives, that child will have other siblings. Sec- ond, the infant's sense of self in connection with others is not sufficiently developed to experience the loss of the sibling as a loss.

Would it be clearly wrong for the parents to consent to the transplant? If there is some moral grounding for the decision to consent to the transplant, it cannot plausibly be because of the interests or rights of the healthy twin. Furthermore, we would probably con- demn such consent were the recipient of the marrow not to be a sibling, but rather a stranger. Something about our understanding of a family legitimizes such consent, or at least allows us to represent the situation as a moral dilemma for the parents. Outside an intimate context such proxy consent would seem immoral-unquestionably so. Within an intimate context things change.

In suggesting a reorientation of moral philosophy along the paths of ideal pictures, at least as a means of dealing with intimate relationships, I don't mean to suggest that numerous problems won't arise as we attempt to clarify what is meant by such an ideal. Not only is the suggestion admittedly vague, but nothing has been said about evaluation of ideals themselves or how to resolve competition among ideals." For the present, these crucial issues will be passed over.

One widely shared ideal of the family involves responsibility, privacy, and autonomy of the family unit. Tradi- tionally this has meant allowing parents considerable discretion in decid- ing what is best for the family as a whole and what is best for the children. It has also meant that the parent is trusted and expected to make decisions with sensitivity for these concerns. While we are aware that a substantial number of parents fail to live up to such standards, we must recognize that the vast majority do well. Efforts at protecting children as well as efforts at promoting respect for the dignity of children must display appreciation for the self-image of responsible parenting that does predominate in society. For not only does that by and large protect children's interests, but it is part of- indeed central to-the kind of intimacy generally achieved in family units. A family relationship is one of the special kinds of significant relationships that it is important to maintain and that morally makes a claim upon us just as does concern for the dignity and well-being of children. Emphasizing the autonomy of children and introducing state or private agencies to intervene into the domestic situation to set things straight may not be the best means of promoting the responsible self-image of parenting crucial to the family. Nor may it be the best means of preserving the intimacy that is central to our lives.

The amount of discretion allotted to parents is not unlimited. When parental decisions constitute imminent serious danger for the child and when such danger comes to public light the state is authorized to intervene on behalf of the child-though intervention here must be via the least disruptive means consistent with protection of the child. Because of the privacy accorded to families, however, the dangers to the child must be made manifest before the state can intrude into relationships. The danger to the child must be evi- dent in the public domain either because teachers or neighbors or doctors see signs of abuse or neglect or because the child presents authorities with a believable and serious complaint.

We must recognize as largely empirical the questions: whether, and what kinds of, state interventions affect the level of intimacy and responsibility in particular families directvl affected?'2 Also an empirical question is: how do different systems of intervention affect overall social attitudes toward intimacy and responsibility in the family context? If it can be shown that various forms of coercive intervention leave levels of intimacy and responsibility in-



June/July 1982

tact or heightened, then this would undermine the primary reason for restricting state intervention. If no evidence is forthcoming indicating that interference depresses the sense of intimacy and responsibility, then again one major reason for limiting state involvement would be discredited.

We would confront a dilemma if we discovered that steps that proved helpful in protecting children in neglective and abusive contexts diminished the overall sense of intimacy and responsibility by changing social attitudes. The analogy to therapeutic alternatives to punishment is apt here. Even if it were established that therapeutic alternatives had a better chance of reducing recidivism and building a sense of social responsibility than did punishment, it would not immediately follow that punishment was to be foregone. The reason is that the prospect of legal punishment may have a deterrent effect on those who are presently law- abiding but who would commit crime were the fear of punishment eliminated or were the stigma associated with law violation altered as a result of the therapeutic conceptualization. The analogy points to the limited relevance of clinical evidence relating to coercive intervention into families. Such evidence can indicate the direct effects of intervention but not the indirect effects on social attitudes."3 Of course it would be equally difficult to establish that there is an indirect detrimental effect of coercive intervention. Whatever is discovered about the effects of state involvement when coercively initiated, there is every reason for expanding opportunities for families who want or need assistance in caring for children.

Researchers attribute a small per- centage of child abuse and neglect to pathological conditions of the parents. Of apparently much greater significance in accounting for child abuse are social attitudes that tolerate the use of force in dealing with children and in resolving human conflict generally.14 For many cases of child abuse and for many cases in which children confront violent and dangerous environments, there is scope for the deterrent aspects of social and legal policies that an- nounce that hurting or endangering children is wrong. The literature on de- terrence suggests that it is precisely in those realms of behavior where social attitudes are not already strongly con- demning of certain acts that legal con- demnation and punishment are most effective in altering behavior.'5

Let me conclude by suggesting ways in which I think that public policy may have important effects on people's rela-

tionships to one another. There is some reason to think that social policy can affect widely shared individual judgments and values. Richard Titmuss'6 has argued that commercialization of blood-giving has in fact disoriented and depressed people's naturally al- truistic attitudes toward others in the context in which some are especially vulnerable, as in the life-threatening medical context. The market in blood, Titmuss has argued, has given persons, who are capable of feeling personally connected with those in desperate need, an important incentive to see their relationship as impersonal and commercial, devoid of a human and personal message.

Prohibitions on the sale of organs and of children are presumably motivated, in part, by a concern for the consequences on social attitudes. And to take just one more area, in the law of evidence, certain costs in terms of truth and justice to the aggrieved par- ties are borne in order to hold sacro- sanct confidential communication between spouses, in the hopes of not depressing the general sense of trust spouses feel that they can place in one another. And recently recognized has been a privilege on the part of parents not to reveal incriminating communication from their children-again to maintain a public sense of respect for parent-child intimacy.

In general, the way the state can offer aid to intimate relationships in society is to put up barriers to itself, preclud- ing state intrusion into the autonomy and privacy of relationships unless clear and present dangers make themselves manifest. And when the state has no decent option but to interfere, it

ought to do so in the least obtrusive way compatible with its objectives. Dealing with families in need in this way is consonant with one major ideal picture of the family and may promote acceptance of the picture through this public recognition.

Those advocates of children's rights who are primarily motivated by a concern with child abuse and neglect might better accomplish their goal of heightening sensitivity to the needs of children by encouraging people to reflect on what connects them to their children. And those advocates of children's rights whose primary concern is upholding the dignity of children through recognition of their autonomy status might ponder the question of whether the stress on autonomy is the premier moral concern much of moral philosophy has made it appear. I have argued that a concern for intimate relationships may provide us with a reason

for thinking that pointing to rights isn't always morally paramount.

ACKNOWLEDGMENTS A version of this paper was presented at Brown

University in a symposium entitled "The Child: Physicians, Family and Society," on May 1-2, 1981. I am indebted to the partici- pants at that symposium for stimulating criticisms. A version of this paper was also presented to the Family Development Study at Harvard Medical School in June, 1981. I am indebted to Dr. Eli Newberger and his group for a challenging and enlightened discussion of the issues. For helpful discussions I am also indebted to Sara Schechter-Schoe- man, Robert Levine, Barry Loewer, Michael Gardner, Jane Littmann, Nancy Sederberg, Bonnie Montgomery, Herbert Fingarette, and Herbert Morris.

REFERENCES 'Cohen, Howard: Equal Rights for Children.

Totowa; Littlefield, Adams, 1980. 2Damon, William: The Social World of the Child.

San Francisco: Jossey-Bass, 1977, p. 8; Lewis, Catherine C.: Adolescents' Decision Making: Three Studies Relevant to Policy Issues. Ph.D. thesis, Stanford University, 1979, pp. 40-41; Elkind, David: A Sympathetic Understanding of the Child, Birth to Sixteen. Boston; Allyn, Bacon, 1974, Chapter 10.

3Nisbet, Richard, and Ross, Lee: Human In- ference: Strategies and Shortcomings in Social Judgment. Englewood Cliffs, N.J.; Prentice- Hall, 1980.

4Elkind, David: Children and Adolescents. Oxford: Oxford University Press, 1970, pp. 66 ff.

sSee Parfit, Derek: "Later Selves and Moral Prin-

ciples," in Montefiore, ed., Philosophy and Personal Relations. Montreal; McGill-Queens University Press, 1973, pp. 137-169.

6Herbert Fingarette presented me with the argu- ments in this paragraph.

7See Schoeman, Ferdinand: Rights of parents, rights of children and the moral basis of the family. Ethics 91: 6-19, 1980. For a critique of orthodox developmental psychology which focuses on such limitations see Gilligan, Carol: Woman's place in man's life cycle. Har- vard Educational Review, 49: 1979.

"See Schoeman, Ferdinand: "Friendship and Tes- timonial Privilege" forthcoming in N. Bowie and F. Elliston, eds., Ethics, Public Policy and Criminal Justice (Cambridge, 1982).

9"Children's Responses to Stress and Disadvan-

tage," in Kant and Rolf, eds. Primary Preven- tion of Psychopathology (Hanover, 1979), pp. 64-5.

1'I am indebted to Sara Schechter-Schoeman for

suggesting this type of dilemma as supportive of the theory being proposed here.

"In focusing on the problem of comparing ideal

pictures, we can look at a possible objection to the broader application of the thesis here

being developed. This objection involves pointing to a comparison with the woman's rights movement. Undoubtedly, this movement has had important consequences in both the public sphere and in the intimate realms of persons' lives. Would not the kind of reasoning suggested in this paper lead one to think that it would have been better had

rights not been stressed in the realm of personal relationships of women's lives?

While the comparison does cause me some uneasiness there is something to be said in behalf of the theory. One way of interpreting the effect of the woman's rights movement is to see people shifting from one ideal-a pa- triarchal one-to another more egalitarian ideal. Which ideal is better is not to be settled by cataloguing rights that get acknowledged under each, though such a comparison is rele-

5



IJD 0

vant. Rather, a more sensitive approach is required-one which focuses on the psychological and social effects of each alternative within the social context. Though we do have a situation of competing ideals we also have a way of adjudicating between them by reflec- tion on the kinds of lives and relationships people will achieve under each.

12See Bourne, Richard and Newberger, Eli, 'Fam- ily autonomy' or 'coercive intervention'? Am- biguity and conflict in the proposed standards for child abuse and neglect. Boston University Law Review, 57; 670-706, 1977 and Wald, Michael: Thinking about public policy toward abuse and neglect of children: A review of Before the Best Interest of the Child, Michigan Law Review, 78; 645-693, 1980. Both authors suggest that timely intervention into

family affairs even before there is evidence of imminent serious harm to the child may be

beneficial to the family. See also Kempe, Ruth and Kempe, C. Henry: Child Abuse (Cambridge, 1978) especially chapter 5 for a very optimistic appraisal of the predictability of abuse and success of preventive intervention. Overall the Kempes claim that 80% of abusive families can be successfully treated in a way that precludes further abuse. For a more general and pessimistic outlook on the

helpfulness of intervention into families see McCord, Joan: A thirty-year follow-up of treatment effects, American Psychologist, 33; 284-291, 1978.

13One could further raise the issues of whether providing scarce but helpful resources to troubled families in which there is abuse may

encourage abuse as a means of obtaining such resources, consciously or unconsciously. Al- ternatively, one could argue that labeling abuse as a disease may increase an abusive parent's willingness to seek help. See New- berger, Eli and Bourne, Richard: Medicaliza- tion and legalization of child abuse. American Journal of Orthopsychiatry, 48; 593-607, 1978.

'4Straus, Murray; Gelles, Richard; and Stein- metz, Suzanne: Behind Closed Doors: Violence in American Families. Garden City: Double- day, 1980 esp. Chapter 2.

"Hawkins, Gordon, and Zimring, Franklin: De- terrence: The Legal Threat in Crime Control. Chicago: University of Chicago Press, 1973.

'6Titmuss, Richard: The Gift Relationship: From Human Blood to Social Policy. New York: Pan- theon, 1971.

6

CASE STUDY:

How an Investigator and an IRB Cooperated in Research Design by Joseph R. Benotti and Thomas A. Shannon

A specter lurking behind many discussions of the role of IRBs is the charge that the restrictions of research review and regulation will inhibit or dampen the creative zeal of investigators. Or, so the worry goes, an investigator may become frustrated by trying to conform to the IRB's recommen- dations or from trying to discern what the IRB really wants and, in disgust, simply stop the research.

We present this case study, not as a definitive answer to the allegations, but to show that it is possible for an investigator and an IRB to collaborate to insure the protection of human subjects as well as the development of new and beneficial medical knowledge. We think this example may also be helpful because it also involved collaboration with the FDA as well as redesign of the research protocol.

The Benefits

A new cardioactive drug, Amrinone, has been shown to improve cardiovascular function and improve symptoms and exercise capacity in patients with heart failure. Amrinone ap- pears to have a potentially wide application to patients with cardiac dysfunction from a variety of causes.

This drug may also be useful for patients undergoing open-heart surgery. After surgery, the patient's heart often functions very poorly and requires the administration of potent cardiac stim- ulants and/or the insertion of a me-

chanical device to assist in pumping capacity. Presently available stim- ulants can be given only intravenously and require sophisticated and expen- sive monitoring procedures, which in themselves carry some degree of risk.

Mechanical cardiac assist devices can be used only for five to seven days because they carry a risk of infection or damage to the blood vessels. Accord- ingly, there is a need for a new drug, which not only could stimulate the heart to pump more efficiently but also could be given orally as well as intravenously, but without the requirement for extensive monitoring in the Inten- sive Care Unit. Such a drug could hasten the recovery of patients following open-heart surgery, reduce their stay in the Intensive Care Unit with its attendant risk for infection and other complications, and ultimately reduce the risk and cost of open-heart surgery. It is possible that Amrinone might sat- isfy such requirements.

The Risk Factor

However, Amrinone carries a risk factor. Though undetected in Phase I studies, this drug was later found to reduce platelet count by removing circulating platelets and accelerating their destruction in 10-15% of patients. The reduction in platelet count is infre- quent and is manageable by reducing the dose or discontinuing the drug, and it has not been associated with overt or occult bleeding. Other known side effects such as liver dysfunction and stomach upset are, in comparison with the platelet count reduction, relatively minor. It is also established that the

heart/lung machine used for cardiopul- monary bypass predictably lowers the platelet count to about 30-50% of normal immediately after open-heart surgery. This reduction occurs because of damage to the platelet membrane in- curred as blood is pumped through the heart/lung machine. Damaged platelets are then prematurely removed from circulating blood in the patient's body.

The dilemma that Amrinone presents is that while it might increase the patient's postsurgical cardiovascular function and thus benefit the patient, it might simultaneously lower the already decreased platelet count. This re- sults in an increased risk of hemor- rhage, which might require platelet transfusions or further surgery. Bleed- ing, secondary to a pump-induced de- crease in platelet count and by Amrinone, could be of sufficient magni- tude to require reoperation within the first 12 to 24 hours following the initial procedure. Since this would need to be done at a time when the cardiovascular reserve of the patient is already mark- edly depleted, the morbidity and mor- tality risk would also increase.

The Research Design

The clinical investigators proposed to resolve the problem in two phases. Part I would be a study in 10 patients who do not require therapy to stimulate their heart following cardiac surgery. The purpose of this study would be to determine not only the hemo- dynamic effects of Amrinone, but also whether or not it has any adverse effect on the platelet count in patients follow-

Joseph R. Benottl is Assistant Professor of Medi- cine; and Thomas A. Shannon is Associate Pro- fessor of Medical Ethics, both at the University of Massachusetts Medical Center.



protecting intimate relationships: children's competence and children's rights

Documents