Making Sense of Adolescent Decision- Making ...

Adolesc Med 022 (2011) 195–206

Making Sense of Adolescent DecisionMaking: Challenge and Reality Yoram Unguru, MD, MS, MA* Division of Pediatric Hematology/Oncology, The Herman and Walter Samuelson Children’s Hospital at Sinai, 2401 West Belvedere Avenue, Baltimore, Maryland 21215-5271; Johns Hopkins University, Berman Institute of Bioethics, Baltimore, Maryland

Case: Sam, a precocious 14-year-old, presents to his pediatrician for an annual physical examination. Just before entering the examination room, he informs his mother that several months ago he noticed a “lump” on his right testicle. The lump, still present, is hard and painless. An ultrasound raises suspicion for a testicular malignancy. Sam is referred to a pediatric oncologist for further evaluation. Sam is clearly uneasy throughout the interview with the senior female pediatric resident. Sensing Sam’s discomfort, the resident opts to skip the testicular exam. After completing the history and abbreviated physical, she excuses herself and returns shortly thereafter with the attending male pediatric oncologist. Sam insists that both his mother and the female resident leave the room. He begrudgingly submits to an examination by the male pediatric oncologist. The pediatric oncologist informs Sam and his mother that surgical intervention is necessary to confirm his suspicion of testicular cancer and that the pediatric surgeon is on her way. Sam is visibly upset. He is quite emphatic that no “girl” touches him “down there.” Additionally, he does not want a lifelong scar and is afraid it will (sexually) disadvantage him in the future. Sam understands why surgery is necessary, yet despite his mother’s insistence that he go ahead with the surgery, he adamantly refuses. He states that forcing him to have surgery against his wishes is “assault” and he threatens to do “whatever it takes,” including physically resisting and calling a lawyer if necessary. We shall return to the case after a general discussion of the central issues it embodies.

*Corresponding author. E-mail: [email protected] (Y. Unguru).

Copyright © 2011 American Academy of Pediatrics. All rights reserved. ISSN 1934-4287

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Y. Unguru / Adolesc Med 022 (2011) 195–206

MEDICAL FACTS

Testicular cancer comprises 1% to 2% of all cancers in children and adolescents. Sonography is helpful in determining the nature of a testicular mass as either benign or malignant, yet definitive diagnosis requires pathological confirmation obtained via surgical intervention. When the concern for malignancy is high, most surgeons prefer to perform an orchiectomy (surgical removal of the testis). BACKGROUND AND DISCUSSION Decision-Making Capacity and Assent

By definition, children constitute a vulnerable population. The vulnerability of children relates directly to their limited decision-making capacity (ie, the ability to make reasonable decisions). Capacity for informed health care decisionmaking rests on the following three criteria,1 all of which must be met before an individual is deemed a capable and autonomous decision-maker: (1) the ability to understand and communicate relevant information (as it relates to a medical condition); (2) a framework of values that provides a context for specific value judgments; and (3) the ability to reason about all available options and appreciate their effect, including risks and chances of success. This last aspect is the most demanding, requiring that individuals be able to make inferences or appreciate cause-and-effect relationships, “if A, then B,” or viewed within the medical context, that a given medication or intervention has the potential to cure an illness, but may not, and in fact, could conceivably cause adverse effects. Thus, because many children (eg, infants and young children) lack decision-making capacity to make informed and voluntary decisions, they are deemed vulnerable and merit special protections. Older children and adolescents, however, often possess capacity for decision-making and therefore, may be qualified to make select decisions while unable to make others. It is the pediatrician’s role to determine if a child/adolescent has the ability to make a given decision. Before examining how physicians, researchers, and ethicists define assent, it is useful to consider general definitions of assent. In the Oxford English Dictionary (OED 1971, s.v. “assent”), assent is defined as (1) the concurrence of the will, compliance with; (2) official, judicial, or formal concurrence of will; sanction; the action or instrument that signifies such concurrence; (3) the concurrence of a number of persons in sentiment or purpose; accord; (4) opinion; (5) agreement with a statement, an abstract proposition, or a proposal that does not concern oneself; mental acceptance or approval. The fifth definition is particularly problematic and as Joffe adroitly points out, “nothing could be more alien to the spirit . . . intend[ed] by engaging children in decisions about their treatment and research participation.”2 The ethical principle of pediatric assent recognizes that children (especially adolescents) are capable of participating in decision-making related to their care.


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The goal of assent is to protect children’s rights.3 The assent requirement, traced to the concept of respecting children as individuals, calls for the need to recognize and respect the wishes of children as they develop cognitively and mature.4 Failure to appreciate this process disrespects children as moral agents and ultimately has the potential for stunting the natural growth of a child to become an autonomous individual. Thus, it is appropriate and ethically justifiable to solicit assent from children who are unable to make autonomous choices. Above all else, assent is about respecting a child’s “developing capacity.”5 Respecting a person means helping them to make choices that are as informed as possible. For assent to “work” it is important that the physician know the individual child. This demands an appreciation of the child’s developmental stage and recognition of his/her basic preferences. Parents possess knowledge of their child’s preferences and developmental stage and are ideally situated to assist the physician in acquiring information. Understanding or capacity for decision-making is one critical component of assent. Giving patients information without guaranteeing that they understand it is tantamount to not giving information at all. This is especially true when patients have a diminished ability to understand, as children might. A second and equally important facet of assent is the child’s desire to make decisions.6 A child should be included in medical decisions to the extent of his abilities and his desire to be involved.7 Children need to be encouraged by parents and physicians to communicate openly so that they may be active participants in the assent process. Shared decision-making empowers children to the extent of their capacity.8 Capacity for decision-making is not a fixed phenomenon, but rather a process that matures with time and experience. Not all children experience life, health, or disease in exactly the same way, and each child’s personal experiences with decision-making are unique. These experiences contribute to the child’s unique capacity for decision-making. As recognized in common law, minors possess varying degrees of decision-making capacity. The rule of capacity, also known as the Rule of Sevens, is strictly an age-based criterion. Accordingly, minors younger than 7 years of age have no such capacity; minors between 7 and 14 years have a rebuttable presumption of no capacity; and minors between 14 and 21, have a rebuttable presumption of capacity.9 Weithorn and Campbell10 showed that children 14 years and older are as competent as adults in making informed treatment decisions. Age alone however, does not indicate a child’s ability to understand. Knowledge; health status; anxiety; experience with decisionmaking; and each child’s unique cultural, familial, religious background, and values all play a role in children’s understanding of their situation and impact their ability to make decisions. Children who, either because of poor health (often resulting in more experiences and a greater role in decision-making) or because their parents have allowed them to make “life decisions,” seem better


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equipped to appreciate that their choices carry certain consequences may, therefore, have a greater understanding of what is required to assent to participate in medical (and research) decisions than a healthy child, or a child whose parents have insulated them from making decisions. Assent Is Not Consent

Informed consent is grounded on the notion of respect for persons. Autonomy is the right of a rational person to make his or her own decisions and provides a moral justification for the doctrine of informed consent. Capacity to consent requires the legal ability to form a valid contract and the psychological or developmental ability to make sound decisions. Hence, minors cannot give valid consent, but they may give assent. Consent for adults is based on the principle of autonomy, which in turn focuses on competence, a legal term. Assent on the other hand is better viewed as focusing on capacity, a developmental term.11 Compared with adults, a less exacting capacity for decision-making is necessary for a child to meaningfully assent. Assent empowers children to the extent of their capacity. Assent differs from consent to the extent that, although the willingness of a minor to accept treatment is an important consideration, it is exactly that—a consideration. Treatment (based on a child’s best interests) often may proceed against the minor’s wishes if his or her parents consent. Thus, parental permission may trump assent and is legally binding. Roles and Responsibilities

Although children occupy a central role in the assent process, parents and physicians also have important positions to fulfill. In fact, the manner in which parents and physicians interpret assent not only affects children’s level of involvement, it ultimately has significant repercussions in shaping how assent is implemented. Traditionally, assent has been framed within a hierarchy, with parents at one end of the axis and child at the other.3,12 This axis, linked to parental decision-making and ultimate parental authority, favors parents, who are recognized as the child’s legally authorized representatives. In other words, assent, as it is implied in most instances, assumes children should, and will, go along with whatever their parents opt for them to do. Practically, a child’s decision is rarely made independent of his parents. To varying degrees, a child’s decision is an amalgam, simultaneously an expression of preference infused with parental purpose. Failure to recognize the interrelated nature of child-parent decision-making is a failure to appreciate how most families function. Arguably, a more child-centered approach12 is a preferred assent


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model. Although difficult, striking the right balance between children, parents, and physicians is both appropriate and necessary. Many clinicians tend to view assent as an all or nothing phenomenon (either children should be allowed to decide or not). As shown in a recent survey conducted by Lee and associates,13 80% of pediatric subspecialists believed that assent was valid and important, yet most would opt out of including a child in the decision-making process if the child’s parents objected to this, even if their own inclination was to include the child. The authors concluded that although clinicians are willing to include children in treatment-related discussions, they hesitate in allowing them to share in decision-making authority. Unless children are allowed to occupy their deserved position in the decision-making process, thereby providing for a more substantive model of assent, assent will continue to be an empty concept. One way to accomplish this is for physicians and investigators to view assent through a clear lens. As appreciated by the American Academy of Pediatrics (AAP),14 Children’s Oncology Group (COG),15 and others,16 asking for a child’s opinion without intending to honor it is wrong. If physicians’ and researchers’ intention in asking is simply to say that they have done so, the result is that children are treated as mere means, they are not respected as developing autonomous individuals, and assent will continue being a requirement rather than an important and reachable ideal. The principle of respecting a child as a developing person requires that physicians inform the child that, although they value his opinion, in specific instances they may override it. Failure to do so has the potential for damaging the child’s developing self as well as the trusting relationship between the child, his parents, and physician. Parental Permission and Surrogate Decision-Making

Medical decision-making for minors is primarily based on the best interests standard. Parents, arguably more than anyone else, possess knowledge of their child’s preferences and developmental stage. Unless proven otherwise, parents are assumed to have their child’s best interests in mind and act accordingly. Parents have the legal and moral authority to decide what’s best for their child for several reasons.17 First, parents are assumed to care about and know their child’s unique needs better than anyone else. Second, parents are understood as actively promoting their child’s well being. Third, the interests of family members may conflict, and parents are presumably more able than outsiders to balance the competing interests of family members in making a final decision. Finally, as caretakers, it is parents who have to contend with the consequences of their choices. Parenthood alone however, does not qualify one as an adequate surrogate decision-maker. A parent or guardian must meet four preconditions to make decisions for someone else.18 Surrogate decision-makers must: (1) be competent to make reasoned judgments; (2) possess adequate knowledge and information; (3) be emotionally stable; and (4) be committed to the incompetent patient’s interests.


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Concerning precondition number four, although it may seem obvious that parents act as their child’s advocate, just because parents are committed to their child’s interest does not mean they always make the best decisions for them. Children need to be protected from the consequences of unwise decisions made by themselves and by others and it is the pediatricians’ job to identify when a parent or surrogate’s decision jeopardizes a child’s well-being. Care and Research

Assent for research differs from assent for clinical care. For assent to be truly meaningful, an understanding of the difference between the two is imperative. Clinical care (ie, treatment) focuses on an individual patient. It employs recommended treatments, the benefits of which are assumed to outweigh risks. Clinical research on the other hand, seeks to provide generalizable knowledge with the potential for benefiting future patients (and may not offer benefit to the participant at all). Therefore, although clinical care is grounded on promoting a patient’s best interests, clinical research does not share this goal; instead, it employs subjects as a means to an end. Appreciating this difference in the purpose of clinical care and research is extremely important. Thus, before a child (or adult) assents to research participation, he/she must understand the underlying purpose of the research protocol and that it may hold no direct benefit to them or even harm them. Hence, assent or consent in research settings demands a more nuanced and refined decisional capacity than assent and consent to clinical treatment.19 Barriers Influencing a Child’s Ability to Participate in Decisions

For assent to be valid, it must be voluntary. A child’s freedom to choose may be influenced by many competing interests that call into question if a child is ever truly a voluntary decision-maker. Each decision or choice a person makes is ultimately influenced by and affects others, and children are no exception. It is useful to consider how children, especially sick children, see themselves and view their place within their larger social networks. In their seminal work on informed consent, Faden and Beauchamp identified the concept of “role constraints,” which serve to limit a person’s ability for autonomous expression.20 Hospitals, and by extension illness, are examples of a constraining institution or circumstance. As hospitalized (ill) patients, children take on a role and adopt a series of behaviors consistent with that role. Faden and Beauchamp assert that the expectations associated with the role of a patient are constraining, and a unique feature of this role is to place the (child) patient in a passive position with authority figures (ie, physicians and parents), who assume a more powerful and controlling position. Therefore, the ability of a child to voluntarily make a decision is limited by his or her role as a hospitalized or ill patient. For example, children are particularly vulnerable to influences in medical consent/assent situations because of their physical, emotional, and financial dependency on adults21


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and because of their relative inexperience with health care–related decisions. Subsequently, rather than act with developing autonomy, minors may regress to dependency on significant others.22 Although adolescents may possess the skills to make informed treatment decisions, they often lack perspective and life experience. As such, they are more likely to act impulsively and to focus on their current situation rather than the future. Minors must be guaranteed added protections ensuring their ability to provide voluntary and informed decisions. Another barrier to children’s involvement in medical decision-making are parents. Many parents feel that decisions about what to do concerning their ill child’s life are theirs to make, regardless of the child’s awareness or capacity.23 Some parents are not aware that it is acceptable to include their children in the decision-making process.24 Thus, it becomes the physician’s responsibility to broach the topic of children participating in decisions about their care. Ideally, physicians need to do this relatively early on in discussions with families and should revisit the point periodically to assure that a child’s increased decisionmaking parallels their developmental growth. For assent to be more than a mere symbolic gesture, it needs to be viewed as a process, rather than as a one-time event, filed away and forgotten (as is often the case). As a child matures, gaining both life and health-related experience, physicians must ensure that concepts and questions not relevant to the younger child when assent was initially obtained and which may become relevant to the older, more experienced child, are brought up and addressed. Physicians need to continually remind themselves that a meaningful definition of assent requires the involvement of child, physician, and parents who serve as a bridge between the developing child and physician until the child is able to make decisions as an adult on his/her own. Societal and Legal Attitudes toward Assent

There is sufficient evidence supporting a role for children’s involvement in decisions related to their care and research involvement. In addition to promoting a child’s developing sense of autonomy and personal responsibility, participation in decision-making may in fact improve a child’s response to treatment.25 Nevertheless, there is a reluctance on the part of legal institutions and the public at large to include children in certain treatment-related and research-related decisions. Part of this reluctance concerns the potential for child-parent conflict as it relates to the appropriate moral weight to assign to children’s assent and/or dissent. As appreciated by Baylis and colleagues,26 this is particularly germane to children’s involvement in research settings, yet it is relevant in the clinical arena as well. If a child’s decisions carry the same power as the decisions of their parents, then from a moral and ethical perspective the child may veto the parents’ decision if and when they disagree about research involvement or a particular clinical decision. Purely from an enforcement perspective, the difficulty with this scenario is primarily a legal one. Although morally a child’s decisions may be no different


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from those of their parents, the difficult question that arises in such a situation is, should the decisions of a child who lacks legal standing be as authoritative as those of his parents? Baylis et al26 argue that concepts of assent (for research), which rely on decisional authority, are too narrow and instead need to expand their focus and consider to what extent a child may participate as “assenter or dissenter.” Thus, a child may still have a valuable contribution even if they lack decisional authority. Baylis26 describes this as a “receptive role,” rather than a “decisional role.” Determining a Child’s Decision(s) as Valid

For a decision to be valid, it must be voluntary and informed. No universally accepted standard defines decisional capacity. Whether a person possesses decisional capacity depends on the type of decision and the risks and benefits involved. Capacity is linked both to developing cognition and to prior life experiences. Decision-making capacity by children requires that the child possess the freedom to choose, their choice must be both reasonable and rational, and the child must understand information that is relevant to his/her choice. Thus, before soliciting assent from a child, it is crucial that the physician assess the child’s level of understanding. This is one way to assure that assent is significant and meaningful. However, assessing understanding alone is not sufficient. The process of obtaining a child’s assent requires several steps (AAP):14 the physician must (1) help the patient achieve awareness of their condition; (2) tell the patient what to expect regarding diagnosis and treatment; (3) assess the patient’s understanding; (4) assess factors influencing patient responses (ie, undue pressure); and (5) solicit the patient’s willingness to accept care. Balancing the Goals of Children, Parents, and Caregivers

It is apparent from interviews with children that they want to be involved in decisions that concern their bodies and health.24,27–28 They also want and appreciate their parents’ role in helping them guide these decisions.27–28 Children recognize their role in decision-making as intertwined with that of their parents and respect their parents’ input. A direct correlation exists between children’s preference for parental involvement and the level of risk in a particular scenario.8 Understandably, children want parents to have a greater role when they perceive a situation to be more risky. This finding emphasizes the importance that parents need to help children recognize their abilities and responsibilities as part of the process that constitutes meaningful assent. The AAP encourages pediatricians to evaluate each child’s capacity for assent on an individual basis. Based on their development, children are encouraged to “provide assent to care whenever possible.”14 The AAP views assent as a process that ideally incorporates joint decision-making by all parties. The Academy


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endorses the view that discussion leads to the development of a meaningful relationship between a child and physician, and it is this aspect of assent that is paramount in the process. Clinicians should make every effort to provide parents with the tools to allow their children to think independently. Doing so enables children to make reasoned and valid age-appropriate decisions knowing that they can rely on their parents to support these decisions. Children learn to make good, sound decisions with practice and by relying on those they trust. Parents and children may not be in a position to fully recognize the extent to which their relationship may serve to limit a child’s ability to make free or voluntary decisions. Thus, it is the physician’s responsibility, as the child’s advocate, to serve as a facilitator and to assure that this process occurs. Medical Decisions Not Requiring Parental Oversight

Adolescents have legally been allowed to make medical decisions for specific conditions for nearly half a century. Minor treatment statutes, known as the mature minor doctrine, allow minors with adequate decisional capacity and understanding of their medical condition, the right to consent to treatment without parental permission. This doctrine applies only to specific medical decisions and varies by state. Age plays a role in mature minor doctrine, with 16 years being the common cut-off, but in some states minors as young as 14 years are granted the right to consent to any medical treatment without parental consent. Legislation, referred to as medically emancipated minor acts, permits minors to seek treatment without their parents’ permission, for sexually transmitted infections, sexual and substance abuse, contraception and pregnancy, and for psychiatric problems.29 Finally, minors who meet criteria for emancipation may consent to all aspects of their care and do not require parental permission. Emancipated minors include children who are either (1) married; (2) active duty military; or (3) living on their own and managing their own finances. Suggestions for a Practical Decision-Making Model with Appropriate Roles for Children, Parents, and Physicians

A strategy that accounts for a child’s developmental level as well as for the child’s unique medical background and history of decision-making combined with familial preferences is most appropriate. A tangible model of assent gives choices to children of all ages.30 As children age and gain experience with decision-making they are to be involved to a greater extent in decisions. Parents and physicians should evaluate a child’s decision-


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making prowess and then designate a role that not only allows the child to make appropriate decisions but that challenges their abilities. This strategy results in one of three decision-making roles determined by the gravity of the decision to be made and the child’s capacity. Some decisions are made exclusively by the child with minimal or no parental input; some decisions place the parents in a more central role while children will be “consulted” for their preferences; and finally, some decisions, are made exclusively by parents and children will be asked only to “ratify” the decision. For example, (1) a child might have decisional priority for choosing how blood is to be drawn (ie, right or left arm; with or without a local anesthetic); (2) the child could decide at what time of day a medication is taken, but not refuse to take it; (3) the child could approve of a life-saving intervention, but not refuse it. Giving children the option to decide respects them as persons with developing autonomy, it allows them to learn from the decisions they make and to improve on future decisions, and it provides them with a sense of control and “ownership” that comes with making decisions related to one’s health. Children, parents, and physicians need not be equal in status. Instead, it is vital that each party voice their desires and concerns.23 Parents need to understand the importance of listening to their child’s voice and consider what they say as meaningful. Children need to appreciate that decision-making is a joint endeavor and although their input will be factored into the final decision, it is not theirs alone to make, nor is it necessarily binding. Thus, the physician by establishing ground rules and intervening when and where appropriate, is able to shoulder some of the burden, easing what is a potentially contentious and stressful time for both children and parents. CASE RESOLUTION

We can now return to the case we started with. Legally, Sam’s parent(s) are responsible for his care and for his health. Sam should be involved in decisions that relate to his health and to his body at a developmentally appropriate level. As Sam develops an appreciation of his disease with an understanding of its consequences, and as he starts to take ownership of his care, his decision-making role should grow. Throughout this process, his parents may begin to relinquish certain aspects of his care while still remaining involved in an oversight capacity. Decision-making involving older children requires the patient’s assent and parental permission. Pediatricians are ideally positioned to deal with the inevitable conflicts inherent in difficult cases such as that presented at the beginning of this article. The challenge for pediatricians is to do so in a way that is both sensitive and respectful of the child’s, parents’, and providers’ needs, which are often in conflict with one another. By helping to facilitate, clarify, and resolve areas of contention pediatricians can be extremely helpful.


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CONCLUSIONS AND RECOMMENDATIONS

As a vulnerable group, children are in profound need of protection. By giving children a voice, assent is one way of ensuring some protection. Beyond protecting children, assent is also about respecting children and promoting what is best for them. Respecting a person is impossible without knowing something about them. To know a child demands an appreciation for what they understand and for their preferences. Including a child in decisions without allowing them to actually participate in them is pointless. Parents may not realize that it is acceptable to include a child in decisions or they may not want their child to be included in decisions. Children also vary in how they see their role. Some children are comfortable having a limited (or no) decision-making role, and this should be respected. Other children however, want to be included in decisions and expect their parents and caregivers to listen to them and to weigh their choices; this too should be respected. Physicians are therefore in a unique position as both educators and arbiters. They must educate families about a child’s condition and options, and they must establish that both parents and children understand their, as well as each other’s, role and responsibilities. Parents need to know that their authority will be honored, but that they must consider their child’s opinions. Parents should be provided with the tools to promote children’s independent thinking while continuing to support them. Children must be given a range of choices. This will enable them to be involved in the assent process and provides them with a sense of control and empowerment. Children also need to know that although they will be allowed to participate in the process, their decisions may be vetoed and the reasons for this should be revealed to them. Effective communication is a prerequisite for shared decision-making, and shared decisionmaking is a strong foundation on which to base assent. References 1. Devotee R. Practical Decision Making in Health Care Ethics: Cases and Concepts. Washington, DC: Georgetown University Press; 1995: 80, 105 2. Joffe S. Rethink “affirmative agreement,” but abandon “assent.” Am J Bioeth. 2003;3:9–11 3. Ellen JA. The child’s choice: an essential component in treatment decisions. Child Health Care. 1987;15:156–160 4. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Research involving children: Report and Recommendations of the National Commission for Human Subjects of Biomedical and Behavioral Research. Federal Registrar. 1978a;43(9):2084–2114 5. Bartholome WG. 1996. Ethical issues in pediatric research. In: Vanderpool HY, ed. The Ethics of Research Involving Human Subjects. Frederick, MD: University Publishing Group; 1996: 339–370 6. Spinetta JJ, Masera G, Jankovic M, et al. Valid informed consent and participative decisionmaking in children with cancer and their parents: a report of the SIOP working committee on psychosocial issues in pediatric oncology. Med Pediatr Oncol. 2003;40:244–246 7. Unguru Y, Coppes MJ, Kamani, N. Rethinking pediatric assent: from requirement to ideal. Pediatr Clin North Am. 2008;55:211–222


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8. Geller G, Tambor ES, Berhardt BA, Fraser G, Wissow LS. Informed consent for enrolling minors in genetic susceptibility research: a qualitative study of at-risk children’s and parent’s views about children’s role in decision-making. J Adolesc Health. 2003;32:260–271 9. Cardwell v. Bechtol, 724 SW 2d 739 - Tenn: Supreme Court 1987. Available at: http://scholar. google.com/scholar_case?case⫽16566489286079185850&hl⫽en&as_sdt⫽20000002&as_vis⫽1. Accessed November 22, 2010 10. Weithorn LA, Campbell SR. The competency of children and adolescents to make informed treatment decisions. Child Dev. 1982;53:1589–1598 11. Unguru Y. Children’s views on their involvement in clinical research. Pediatr Blood Cancer. 2008;51:716–717 12. Goodenough T, Williamson E, Kent J, Ashcroft R. ‘What did you think about that?’ Researching children’s perceptions of participation in a longitudinal genetic epidemiological study. Children and Society. 2006;17:113–125 13. Lee KJ, Havens PL, Sato TT, Hoffman GM, Leuthner SR. Assent for treatment: clinician knowledge, attitudes, and practice. Pediatrics. 2006;118:723–730 14. Committee on Bioethics, American Academy of Pediatrics. Informed consent, parental permission, and assent in pediatric practice. Pediatrics. 1995;95:314–317 15. Children’s Oncology Group, Assent Task Force. Guidelines for involving children in decisionmaking about research participation. Available at: https://members.childrensoncologygroup. org/_files/AssentGuidelines/COGAssentGuidelines.pdf. Accessed November 29, 2010 16. Ross LF. Informed consent in pediatric research. Camb Q Healthc Ethic. 2004;13:346–358 17. Diekema D. Parental refusals of medical treatment: The harm principle as threshold for state intervention. Theor Med. 2004;25:243–264 18. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 5th ed. New York, NY: Oxford University Press; 2001: 154 19. Collogan LK, Fleischman AR. Adolescent research and parental permission. In: Kodish E, ed. Ethics and Research with Children: A Case-Based Approach. New York, NY: Oxford University Press; 2005: 77–99 20. Faden RR, Beauchamp TL. A History and Theory of Informed Consent. New York, NY: Oxford University Press, 1986; 368–373 21. Grodin MA, Alpert JJ. Informed consent and pediatric care. In: Melton GB, Koocher GP, and Saks MJ, eds. Children’s Competence to Consent. New York, NY: Plenum Press; 1983; 93–110 22. Weithorn LA, Scherer DG. Children’s involvement in research participation decisions: psychological consideration. In: Grodin MA, Glantz, LH, eds. Children as Research Subjects: Science, Ethics, and Law. New York, NY: Oxford University Press; 1994; 133–179 23. Bluebond-Langner M, DeCicco A, Belsco J. Involving children with life-shortening illnesses in decisions about participation in clinical research: a proposal for shuttle diplomacy and negotiation. In: Kodish E, ed. Ethics and Research with Children: A Case-Based Approach. New York, NY: Oxford University Press; 2005; 323–344 24. Angst DB, Deatrick JA. Involvement in health care decisions: parents and children with chronic illness. J Fam Nurs. 1996;2:174–194 25. Bastien R, Adelman H. Noncompulsory versus legally mandated placement, perceived choice and response to treatment among adolescents. J Consult Clin Psych. 1984;52:171–179 26. Baylis F, Downie J, Kenny N. Children and decisionmaking in health research. IRB. 1999;21(4):5– 10 27. Rossi WC, Reynolds W, Nelson RM. Child assent and parental permission in pediatric research. Theor Med. 2003;24:131–148 28. Unguru Y, Sill A, Kamani N. The experiences of children enrolled in pediatric oncology research: implications for assent. Pediatrics. 2010;125:e876–883 29. Sigman GS, O’Connor C. Exploration for physicians of the mature minor doctrine. J Pediatr. 1991;119:520–525 30. King N, Cross A. Children as decision makers: Guidelines for pediatricians. J Pediatr. 1989;115:10–16


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