Pediatrics, Adolescents

Updated About encyclopedia.com content Print Article Share Article
views updated

PEDIATRICS, ADOLESCENTS

•••

Adolescents, defined as young people between the ages of thirteen and eighteen, have much more autonomy and much more extensive rights to make their own choices about healthcare than their parents did when they were adolescents. Constitutional and other law on reproductive issues and the development of the rights of privacy and of confidentiality also affect adolescents' rights to seek or to refuse healthcare. Until the ratification in 1971 of the Twenty-Sixth Amendment to the U.S. Constitution, which gave eighteen-year-olds the right to vote in federal elections, a "minor" was anyone under the age of twenty-one. Almost all states then changed their laws to make eighteen the age of majority.

Consent to Medical Treatment

Under the common law of England, from which the American legal system evolved, children were, in effect, possessions of their fathers. Until 1772, a mother had no right to her eldest son's custody after his father's death if her husband had chosen to make a will, leaving the boy to another man. Because women could not own property, mothers had the right to custody only of their daughters and their noninheriting younger sons. Even into the twentieth century, fathers retained rights to control their children to the point of brutality. Before 1903 nowhere in the United States was child abuse a crime, because it interfered with the father's right to discipline his children in any way he saw fit. The reporting of child abuse was not mandated until the 1960s. In the context of medical care, the father's total authority was recognized by allowing him to sue a physician who had provided nonemergency medical treatment to a minor— even completely successful treatment—if the father's consent had not been obtained.

Beginning in the 1960s, however, epidemics of sexually transmitted infections (STIs) in adolescents were worsened because the teenagers would not seek medical care if their parents would find out they had been infected. Not only did they remain untreated, they spread the infections to sex partners. Physicians all over the country and the American Medical Association itself began to lobby state legislators to enact statutes permitting minors to receive treatment for STIs in confidence. By the end of the 1960s all states had such statutes and thereafter also added statutes permitting confidential treatment for drug or alcohol abuse problems.

At the same time, about half of the states also enacted general minor consent statutes. Although the ages vary from fourteen to sixteen, these statutes allow a minor who has attained that age to consent to general medical or surgical care, although since 1973 and the Supreme Court's decision in Roe v. Wade, many states have enacted exceptions to this consent related to abortion. Even in states that do not have general consent statutes, courts apply what is known as the "mature minor rule" and hold that a physician is not liable for failing to obtain parental consent to provide medical or surgical services to an adolescent as long as the adolescent is as capable of giving informed consent as an adult would have been.

Therefore, whether a particular minor can consent to a particular medical intervention depends not only on the age and maturity of the adolescent but also on the severity of the condition and the risks of the proposed treatment. Most physicians would be perfectly willing to treat an adolescent for an earache without involving parents, but most, if not all, would not consider treating the same teenager for leukemia without her parents' involvement.

These conflicts rarely involve illness sufficiently severe to require hospitalization, however, because minors are insured, if at all, as dependents in their parents' health insurance plans. A hospital will not permit a nonemergency admission unless the parent agrees to pay or to have their insurance do so. If the physician has not obtained parental consent to a nonemergency procedure, the parent does not have to pay the bill.

In an emergency, parental consent is not required, no matter how young the child, if the parent cannot immediately be found. If a four-year-old falls at preschool and is brought to the emergency department or to his physician's office, if his parents are called but cannot be located, and if the physician proceeds to suture the child's cut, parents cannot thereafter object. In fact, it might be regarded as malpractice to allow an injured child to be denied care because his parent could not be reached.

Parental consent is also not required if the minor is emancipated. Minors are emancipated if they are married or in the military, and in most (but not all) states they are considered emancipated if they do not live with their parents and are self-supporting. Most states also consider a teenage mother to be emancipated, and in some states a pregnant minor is emancipated.

Refusal of Medical Treatment

If an adolescent is able to consent to a particular medical intervention, she is equally able to refuse it even if her parents wish her to have it. These situations usually involve non-life-threatening illnesses.

In no state may a minor execute a legally binding living will (a directive that describes patient preferences in certain medical situations, such as the use of a respirator, to be invoked if the patient is not able to express his or her wishes at the time the decision must be made) or durable power of attorney (a directive that appoints a specific person as the patient's agent to make decisions on the patient's behalf when the patient cannot do so). This does not mean, however, that the young person's views should not be considered. When an adolescent, or even a younger child, has a terminal illness, and there is no realistic hope of improvement, even if parents want to try "one more thing," if the patient wants to change the goal to palliative care, the physician should support the patient's wishes. (Palliative care is that which seeks to alleviate symptoms produced by a life-threatening disease or its treatment and to maintain the patient' quality of life when the medical condition is not remediable.)

Where lifesaving treatment is likely to be successful, but the adolescent does not wish to have it, courts in most states will not allow the patient to refuse. Examples of this situation have involved adolescents who have expressed the desire to refuse blood transfusions for religious reasons. Although a few judges have determined that the teenager had realistically assessed the situation and could give an informed refusal (e.g., In re E.G. [1990]), most others, on essentially identical facts, have simply stated that minors may not refuse lifesaving treatment (e.g., In re Application of Long Island Jewish Medical Center, [1990], Novak v. Cobb County-Kennestone Hospital Authority, [1996]).

Parents, of course, may not refuse lifesaving therapies for their children on religious or other grounds. Furthermore, if a child dies when reasonable medical care more probably than not would have saved the child, the parents may be successfully prosecuted for manslaughter or even murder (Commonwealth of Pennsylvania v. Nixon [2000]).

The "refusal of treatment" may, of course, involve many issues other than legal ones. An adolescent can very easily be so uncooperative that treatment is, for all practical purposes, impossible and he may either threaten to or actually run away.

Confidentiality

If an adolescent is deemed by a physician to be capable of giving informed consent and the adolescent's parent is not involved, the patient is entitled to the same degree of confidentiality that an adult patient would have. If the physician does not involve a parent before the treatment is given, the patient will understandably assume that the care is confidential. If the physician then notifies a parent, the patient's trust in all medical personnel is likely to be destroyed. In some cases, particularly those involving sexual behavior, parents may reject and evict their child when they learn the information, and some of these young people have been driven to suicide (Remafedi, 1999).

In some situations, such as treatment for STIs or for alcohol or drug abuse problems, state statutes mandate confidentiality. Some, in fact, specifically forbid billing parents in these circumstances, lest the parent find out about the treatment from the bill.

The most difficult issue about intrafamily confidentiality in the care of adolescents today involves those who have HIV disease. Although in normal situations parents would be included in decision making when an adolescent has a very serious and perhaps fatal disease, AIDS is likely to engender parental reactions that may be adverse to the patient's medical care—the adolescent may be expelled from the family home and left to live on the streets or be subjected to emotional and physical abuse if remaining at home. While all authorities agree that the patient should be encouraged to include parents in decision making about the disease, there is increasing agreement that if the adolescent is able to consent to testing and counseling, she should be promised confidentiality. This assumes, of course, that medications can be provided free or at very low cost, because health insurance is usually in the parent's name and notice to parents would be given of payments to pharmacies.

AIDS clinics have ample evidence suggesting that adolescents will not come for testing, much less treatment, if they are not assured of confidentiality. Long-term follow-up studies indicate that teenagers whose parents do not know that they are HIV positive fare as well as those whose parents are involved (Kipke and Hein).

The reverse issue in confidentiality occurs when a parent knows the adolescent's diagnosis and does not wish the adolescent to know. The physician's duty is to the patient, not to the patient's parent, so the physician may disregard the parent's request if she deems it in the patient's best interest. In no case, even if the physician is willing to accede to the parent's request, may she lie to her patient, so questions must be answered truthfully even if this leads to the patient's discovery of the diagnosis.

Although this is usually a question of ethics, in some cases there may be legal consequences to the physician for failing to make sure the patient understands the implications of his disease, including the risk of transmission to others. For example, if an adolescent has HIV/AIDS, and the parent is in denial that the adolescent is sexually active, protection of others requires that the patient understands the disease, its ramifications for others, and how to prevent infection through safe-sex practices.

In situations where requests for information come from outsiders, the adolescent patient's rights to privacy and confidentiality are as extensive as those of an adult. A school principal without permission from a parent to obtain medical information about a student has no more right to that information than does the student's neighbor.

Contraception

Contrary to the belief that adolescents are more sexually active than they used to be, the American teenage childbearing rate was 96 per 1,000 girls aged fifteen to nineteen in the late 1950s but fell to 49 per 1,000 by 2000. American girls who are sexually active are much more likely to become pregnant than their European counterparts. The percentage who are sexually active is about the same, but the pregnancy rate is much higher—the U.S. rate is four times higher than Germany's, six times higher than France's, and eight times higher than that of the Netherlands. A study conducted in 2000 by Harold Leitenberg and Heidi Saltzman found that 77 percent of American females and 85 percent of males had had intercourse by age nineteen.

In the 1965 case Griswold v. Connecticut, the U.S. Supreme Court held that married couples have a right to privacy that encompasses their decisions about whether to have children. State laws that made dissemination of information about or prescription of birth control a crime were found to be unconstitutional. This right was expanded to unmarried adults in 1972 (Eisenstat v. Baird ) and in 1977 to minors (Carey v. Population Services).

In 1970 Congress enacted Title X (Family Planning Services) of the Public Health Services Act. This established federally funded family planning services and required that they be provided without regard to religion, creed, age, marital status, or number of pre-existing pregnancies, regardless of outcome. In 1978 the act was amended specifically to include teenagers. Attempts during the administration of Ronald Reagan to require parental notification if a girl received services were held unconstitutional. By statute, in federally funded clinics, services are confidential. There is, however, no obligation on a physician in private practice or an institution that does not receive federal family planning funds to provide contraceptives to anyone of any age.

Many adolescents go directly to family planning clinics instead of their customary healthcare provider because they do not trust their physicians or nurse practitioners to keep their confidences. Thus if an unrelated illness arises where it may be important to know whether an adolescent is taking birth control pills, the physician whom she does not trust is most unlikely to get a truthful answer.

Sexual Abuse

If a very young adolescent (under age fourteen) seeks contraceptives, sexual abuse should be considered but not assumed. After all, asking for contraceptives in and of itself requires some degree of maturity. Many very young girls may well be involved in exploitive relationships with older men; this constitutes statutory rape as well as abuse. In most states the statutory rape statute provides an age differential beneath which the relationship is presumed consensual and above which it constitutes a crime. In most states the differential is five years, so if a fifteen-year-old girl is having a relationship with a nineteen-year-old boy, it is not a crime, but if he is twenty-five, it is. In the mid-1980s the California attorney general issued an order that all sexual activity by children under fourteen had to be reported as sex abuse, and reports were to be made by anyone who had knowledge that a child under fourteen had a sexually transmitted disease or had asked for birth control. In a 1986 case (Planned Parenthood Affiliates of California v. Van de Kamp), this order was struck down by the California Court of Appeals as invasive of the minor's rights of privacy.

Abortion

When the Supreme Court decided Roe v. Wade in January 1973, all the plaintiffs were adult women. Many state legislatures responded to the decision by enacting laws requiring consent to abortion by a married woman's husband and consent by a parent to a minor's abortion. The Supreme Court quickly declared unconstitutional any requirement of a husband's consent (Planned Parenthood Association of Missouri v. Danforth) but in subsequent decisions permitted states to restrict a minor's right to consent (Planned Parenthood Association of Kansas City v. Ashcroft. Since the Ashcroft case in 1983, a state may require parental consent as long as it also provides a "bypass" procedure whereby the young woman may apply to a judge to find her "sufficiently mature" to consent to the procedure. The judge's role is to determine the girl's maturity: The judge's personal opinion of abortion is supposed to be irrelevant. In some states, almost no young women are found "too immature"; in others most girls, even those weeks from their eighteenth birthdays, are routinely turned down. In an article published in the Minnesota Law Review in 2001, Nicole A. Saharsky noted that of the twenty-three states allowing a juvenile to be sentenced to death when convicted of murder, eighteen are also among the most restrictive in limiting the decisions of young women of exactly the same age to have abortions on the grounds that they are too immature. (If there is no state statute, the young woman's right to consent to abortion is the same as her right to consent to any other medical procedure.)

Of course, if a young woman is "too immature" to make this decision, she is altogether likely to be too immature to care for the baby she will have in a few months. It should be remembered that an adolescent mother, no matter how young, has the authority to surrender her baby for adoption, even if her parents strenuously object. Her parents, conversely, have never been given the right to surrender the infant for adoption over her objections. A teenage mother, no matter how young, has the same responsibilities and decision-making authority for her baby as she would if she were thirty. With the exception of a very few states, the teenage mother's parents have no duty to provide for her baby and in some states, because she is emancipated by childbirth, they may refuse further support for her as well, and evict her and the baby from the household (A.N. v.S.M., Sr. [2000]).

Since 1998 there have been several cases in which a girl lied about her age to obtain an abortion, and her parents, upon discovering the situation later, sued the physician who performed it. All of the girls were sixteen or seventeen and claimed to be eighteen. In each case, the suit was unsuccessful, because the consent statutes do not impose a duty on abortion providers to verify the patient's age. The cases Jackson v. A Woman's Choice and McGlothin v. Bristol Obstetrics held that the girls were "mature minors."

If parents have the right to refuse to permit their daughter to have an abortion, do they have the right to require her to have one if they think she is too young to have a baby? Logically, if she is too immature to say yes, she is also too immature to say no. There are very few cases on the subject, but in all instances the courts held that a girl has the right to refuse. None of those cases, however, came from states with parental consent statutes. There is only one case that can be located in which a physician, without telling his minor patient that she was pregnant, performed an abortion at the behest of the patient's mother and lied to the girl about the procedure. Years later she found out the truth and sued the physician. In 1995 the Texas Supreme Court, in Powersv. Floyd, ruled that the physician had not violated the girl's rights. The court held that although the state law had changed by the time the girl discovered the truth, at the time of the abortion, the girl could not refuse abortion because she equally could not consent.

Mental Health Issues

Adolescence is a period during which many serious psychiatric disorders such as schizophrenia begin to surface. Parents, confronted with "normal" rebellious behavior by their teenager, may think he or she has suddenly become mentally ill.

CONSENT TO TREATMENT. The issue of the young person's right to seek mental health treatment is unlikely to involve private psychotherapy, because the parent can refuse to pay the bill and in most cases a young person cannot afford it. A more practical question involves an adolescent's right of access to a community mental-health facility, a drug treatment center, or a counseling center for troubled adolescents. Community mental-health centers are probably covered by the normal rules of minor consent that apply to other medical treatment, because those institutions, most of which receive federal funds, must be careful to comply with requirements of proper licenses and credentials for all staff.

In some cases, however, treatment may be offered by caregivers without formal medical credentials. In drug rehabilitation centers, for example, many of the personnel may be former drug addicts without formal mental health training. Although this may be a viable method of treating addiction, it complicates the issue of the legal right of the adolescent to seek care. All statutes granting adolescents specific authority to consent to medical treatment, and all cases in which these issues have been decided, have dealt with the rights of young people to receive treatment from physicians, nurses, and other healthcare providers who fall within the boundaries of "mainstream medicine." Minor treatment statutes quite specifically refer to treatment given by physicians. Although there are no cases on the point, it is unlikely that courts would extend these rights of consent to encompass an unemancipated minor's right to seek treatment from a chiropractor; it is even more unlikely that a court would hold that an adolescent's right to consent to care would apply to situations in which the minor would choose to consult an alternative healer such as a naturopath. Parents in many cases have been found guilty of child neglect if they refused treatment from physicians and took their children to alternative healers, so it is most improbable that young people have the right to go to the same practitioners on their own. Drug rehabilitation clinics not directed by physicians and nurses and places where therapy is provided by persons outside the credentialed healthcare system undoubtedly would be held to fall into the same category.

REFUSAL OF TREATMENT. Many forms of behavior that may seem perfectly rational to an adolescent can be interpreted by a parent to be sufficiently abnormal to warrant psychiatric intervention, at least on an outpatient basis. By definition, this discussion involves those minors who would generally be considered "normal neurotics" in adult psychiatry. Such adolescents are functional and are not engaging in criminal or dangerous antisocial behavior. They have not engaged in definitive delinquent behavior and are not dangerous to themselves or others. They may be defiant at home, missing school for a few days but not becoming dropouts, refusing to dress as their parents think appropriate, or engaging in equally distressing but non-dangerous activities.

As discussed above, if minors have the right to consent to treatment, a court would probably hold that they have the right to refuse it. More to the point, however, as a fact of psychiatric practice, although it might be possible to subdue a teenager physically in order to remove his or her appendix, it is absolutely impossible to carry out any form of effective psychotherapy on an unwilling patient. The patient will simply refuse to discuss anything. At least one court has held that a school system violates the minor's right of privacy if it sets up a system of routine psychological evaluations in the absence of any behavior that indicates serious emotional disturbance that may require treatment.

CONFIDENTIALITY AND PSYCHIATRIC TREATMENT. What is the psychiatrist's obligation of confidentiality to the adolescent patient? When confidentiality issues arise because schools or other outside entities such as insurance companies or employers want information, the minor's confidentiality protection is as extensive as that of an adult patient. The conflicts arise when the patient's parent is the party who wants the information.

Because young children are almost never treated except in the context of family therapy, this problem rarely, if ever arises, but it does arise often with adolescents. The parent– child relationship may be genuinely adversarial, the parent may be terrified that the adolescent will disclose family secrets or tell the mental health professional about abuse, or the parent may just want to know whether, for example, her daughter is sexually active. Increasingly, as well, when parents are divorced and a child is in therapy, there are attempts to "get" the other parent or to attempt to change custody based on what the adolescent has told the psychiatrist.

Several cases from the 1990s and early 2000s (including Abrams v. Jones [2000] and In re Daniel C. H. v. DanielO. H. [1990]) have held that a parent does not have the right to access his child's psychiatric records over the objection of either the adolescent patient or the mental health professional who believes that such disclosures are not in the patient's best interests.

INPATIENT TREATMENT. There are two distinct standards for commitment of adult patients to psychiatric institutions. Involuntary commitment of adults is reserved for those persons who are "dangerous to themselves or others" or are considered "gravely mentally disabled." For the latter, the legal definition covers patients who, as the result of mental illness, cannot provide the necessities of life—food, clothing, shelter, and medical care—for themselves. Voluntary commitment occurs when the patient and the patient's physician agree that treatment would be beneficial.

Minors of any age fall into an altogether different category. By statute many states allow "voluntary" commitment of children by their parents. Minors who are committed as "voluntary" patients at their parents' behest have fewer legal protections than adult patients do. Adult voluntary patients in a psychiatric hospital can leave at will unless, after arrival at the hospital, they are deemed to fall within one of the categories applied to involuntary patients ("dangerous" or "disabled"), at which point a judge must hold a hearing and the patient must be civilly committed or allowed to leave. Involuntary patients, on the other hand, have a right to a judicial hearing at the time of admission to the hospital and the right to release when they are no longer dangerous to themselves or others. Most states, however, stipulate that minors may not leave a psychiatric hospital without the approval of their parents. If parents choose not to have their child released, the patient cannot legally leave the hospital. Thus, on a standard of reasonable due process of law, hospitalized minors are in a far more restricted legal position than adults.

The case law indicates that there are many situations in which abusive parents have sought to incarcerate their children in psychiatric hospitals for reasons having nothing to do with the children's condition. In the 1960s, for example, some male adolescents were confined to hospitals for months or years because they refused to cut their hair. In many cases, it has become clear that adolescents have been committed to psychiatric hospitals without any serious attempt by admitting psychiatrists to discover whether the young people are really mentally ill.

If a child or adolescent has conflicts with a parent, society apparently concludes that the young person, not the parent, is the one with the problem. This is not necessarily true. In particular, as many judicial decisions have indicated, a parent cannot be assumed to have the best interests of a child at heart when commitment proceedings are undertaken.

In the early 1970s, several cases held that children do have certain minimal rights of due process before being committed to a psychiatric institution, and a right to be released from a hospital or an institution for the mentally handicapped on constitutional grounds if they have been denied a fair hearing and representation by counsel. As a result of these decisions, many states enacted statutes stipulating that younger children (under the age of thirteen or fourteen) could be admitted "voluntarily" to psychiatric hospitals by their parents, but minors over the statutory age had a right to a hearing, counsel, and due process, either at the minor's request or automatically. Where those statutes exist, the rights conferred by them are enforceable in the state courts under state constitutional rights of due process.

In 1979, however, the U.S. Supreme Court in Parhamv. J. R. held that if a state legislature did not choose to enact such a statute, a minor's federal constitutional rights were not violated by "voluntary" admission to a mental hospital by a parent, even if the minor was not free to leave the institution thereafter. The court held that to protect minors from abuses of parental authority, the decision to admit had to be reviewed by a "neutral fact finder," but the fact finder could be a staff physician, "so long as he or she is free to evaluate independently the child's mental and emotional condition and need for treatment." After that decision, no more states enacted due process statutes for minor mental patients. In those states that have not enacted statutes providing for judicial intervention in a minor's commitment, the young person has no right to be evaluated by an independent psychiatrist or to consult a lawyer and may even be denied the right to contact a grandparent or other relative for help.

As press reports in 1991 indicated, some profit-making psychiatric hospitals admitted any adolescent patient whose parents sought his or her admission. Some of these hospitals paid bounties to high school guidance counselors to persuade parents that their children needed hospitalization and then, after the unsuspecting parents admitted them, refused to release the patients for weeks or months. The possibility of abuse of this population is a very serious one, because once hospitalized, the patients can be totally isolated from outside contact. State legislators and judges have been unwilling to deal with the problems of bad-faith actions by either parents or physicians.

An increasingly important problem today involves the rights of young people whose parents have had them admitted to an alcohol or drug treatment facility. The courts in at least two states have held that because these institutions do not claim to be "mental (psychiatric) hospitals," any rights to judicial intervention the minor may have under state law if admitted to a psychiatric hospital do not apply, and that the courts will not question the parent's right to admit the adolescent, even in the absence of an institutional definition of "addiction" to which the adolescent presumably conforms (R. J. D. v. The Vaughn Clinic [1990], Department of Health and Rehabilitative Services v. Straight [1986]). Thus a minor unjustly confined in a psychiatric hospital or addiction facility may have no recourse to, or even a right to contact, outside help of any sort. By contrast, if the parent wishes to turn for help to the juvenile court system and have the child declared "unmanageable" for precisely the same behavior, the child has a presumption of innocence, the right to counsel, and the right to a full hearing.

Participation in Research

In 1974 Congress passed the National Research Act, establishing the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Congress mandated that the commission study the problems of biomedical research and report to the Secretary of Health, Education, and Welfare (now the Secretary of Health and Human Services) on what ethical principles should be applied in research funded by or performed under the direction of the federal government. The Commission was also specifically mandated to consider the ethical and regulatory issues involved in research on a variety of "special populations" deemed particularly vulnerable, including children. The Commission issued significant studies and regulatory recommendations on each of the groups. Most of the recommendations are now federal regulations.

In general, research on minors is permissible if it involves no greater than minimal risk (defined as "the probability and magnitude of physical or psychological harm that is normally encountered in the daily lives, or in the routine medical or psychological examination, of healthy children"); or, when greater risk is involved, if there is likely to be a direct benefit to the young person. Parental permission is required for research on most preadolescent children. The Commission's recommendations and the final regulations permit adolescents to participate in some research projects without parental consent. If the local institutional review board (IRB) determines that a research protocol is designed for a subject population for which parental or guardian permission is not a reasonable requirement, the researcher may include adolescents as subjects without parental involvement. Any waiver of parental permission must be accompanied by the IRB's acceptance of a substitute mechanism for the protection of adolescent subjects or a finding that they are not being placed at any risk. The discretion afforded to the IRB by the regulations for protecting the rights and welfare of the human subjects of all ages in the institution of which it is a part make it extremely unlikely that research that could endanger an adolescent would ever be approved. It is most improbable that any IRB would waive parental permission for adolescent participation in any project that included a serious risk of even minimal harm.

The three following types of research normally involve adolescents who participate without parental consent:

  1. Research in which adolescence is relevant. For example, a researcher might wish to question pregnant teenagers coming to a prenatal clinic about their knowledge of contraception at the time they became pregnant.
  2. Research in which adolescence is irrelevant. For example, a researcher might wish to draw small amounts of blood from volunteers, and a sixteen-year-old, seeing the poster, volunteers.
  3. Research that involves an attempt to recruit subjects from all age groups. For example, an epidemiologist might wish to do a community survey about knowledge of HIV infection, and some of the people she approaches in the local shopping mall are adolescents.

It is likely that an IRB would approve these studies as suitable for adolescent consent without parental involvement. There is a fourth type of research, however, that normally requires parental involvement:

  • (4) Research that is not related to the patient's age but that involves investigational therapy. If an adolescent patient has a disease for which the patient's physician-researcher wishes to administer such therapy, parental permission would almost certainly be sought. Investigational therapies that involve risk (and most do, at least to the same degree that comparable standard treatment does) are reserved for the treatment of serious illness.

It is most unlikely that a physician would be caring for an adolescent ill with the sort of serious condition on which this type of research is done without involvement of parents. It is most unlikely that an IRB would approve this even if the investigator wished to deal with the adolescent patient alone.

Research in schools involving "normal educational practices" is usually exempt from requirements of either IRB review or parental permission. This type of research might, for example, compare two methods of teaching multiplication and has been held to carry no risk of harm. Before passage of the Family Educational Rights and Privacy Act (FERPA) in 1992 and the Protection of of Pupil Rights Amendment (PPRA) of 2002, school-based surveys of children or psychological research involving children were also considered to be of no risk as long as the children were not individually identifiable. Under the 2002 Protection of Pupil Rights Amendment; however, parents may inspect instructional materials to be used in any surveys or evaluations sponsored or funded by the U.S. Department of Education. Schools also are required to adopt policies in conjunction with parents about surveys sponsored by other entities. Under the amendment and regulations to carry it out (as published by the Department of Education), written parental consent is now mandatory before minor students are required to participate in any federally supported in-class survey that would reveal information concerning:

  1. political affiliation;
  2. mental and psychological problems potentially embarrassing to the student or the student's family;
  3. sex behavior and attitudes;
  4. illegal, antisocial, self-incriminating, and demeaning behavior;
  5. critical appraisals of other individuals with whom respondents have close family relationships;
  6. legally recognized privileged or analogous relationships such as those of lawyers, physicians, and ministers; or
  7. income.

If a student may refuse to participate, parental consent is apparently not required. If any research is funded by or is to be submitted to any agency of the federal government or if the institution in which the research is being conducted has agreed to evaluate all research (regardless of funding source) by federal standards, the participants must be advised that they may refuse to participate without penalty or loss of benefits.

Although the National Commission's recommendations included a provision that even small children should have the right to refuse to participate in any studies from which they will not derive benefit, the final regulations on research on children did not include this provision. By the time adolescents can make a decision to participate in research, they can certainly can make a decision to refuse.

angela roddey holder (1995)

revised by author

SEE ALSO: Abortion: Contemporary Ethical and Legal Aspects; Autonomy; Care; Children; Coercion; Competence; Confidentiality; Family and Family Medicine; Infanticide; Informed Consent; Paternalism; Pediatrics, Overview of Ethical Issues in; Sexual Behavior, Social Control of; Students as Research Subjects

BIBLIOGRAPHY

Abrams v. Jones.. 43 Tex. Sup. Ct. J. 1064, 35 SW.3d 620 (2000).

American Academy of Pediatrics. Committee on Adolescence. 1999. "Contraception and Adolescents." Pediatrics 104: 1161–1166.

American Academy of Pediatrics. Committee on Pediatric AIDS. 1999. "Disclosure of Illness Status to Children and Adolescents with HIV Infection." Pediatrics 103: 164–166.

American Academy of Pediatrics. Committee on Pediatric AIDS and Committee on Adolescence. 2001. "Adolescents and Human Immunodeficiency Virus Infection: The Role of the Pediatrician in Prevention and Intervention." Pediatrics 107: 188–190.

American College of Physicians. 1989. "Health Care Needs of the Adolescent." Annals of Internal Medicine 110: 930–935.

American Medical Association. Council on Scientific Affairs. 1993. "Confidential Health Services for Adolescents." Journal of the American Medical Association 269: 1420–1424.

A. N. v. S. M., Sr. 333 NJ Super. 566, 756A.2d 625 (2000).

Application of Long Island Jewish Medical Center, In re. 147 Misc.2d 724, 557 NYS 2d 239. (1990).

Bellotti v. Baird. 443 U.S. 622 (1979).

Bertuglia, Jessica. 2001. "Preserving the Right to Choose: A Minor's Right to Confidential Reproductive Health Care." Women's Rights Law Reporter 23: 63.

Carey v. Population Services International. 431 U.S. 678 (1977).

Commonwealth of Pennsylvania v. Nixon. 761 A.2d 1151. Pa (2000).

Daniel C. H. v. Daniel O. H., In re 220 Cal. App. 3d 814, 269 Cal. Rptr. 624 (1990).

Davis, A. J. 2001. "Adolescent Contraception and the Clinician: An Emphasis on Counseling and Communication." Clinical Obstetrics & Gynecology 44: 114–121.

Department of Health and Rehabilitative Services v. Straight. 497 So 2d 692. Fla App (1986).

Doig, Christopher, and Burgess, Ellen. 2000. "Withholding Life-Sustaining Treatment: Are Adolescents Competent to Make These Decisions?" Canadian Medical Association Journal—Journal de l'Association Médicale Canadienne 162: 1585–1588.

Driggs, Ann Eileen. 2001. "The Minor Doctrine: Do Adolescents Have a Right to Die?" Health Matrix 11: 687.

E.G., In re. 133 Ill. 2d 98, 549 NE. 2d 322. (1990).

Eisenstadt v. Baird. 405 U.S. 438 (1972).

English, Abigail. 1990. "Treating Adolescents: Legal and Ethical Considerations." Medical Clinics of North America 74: 1097–1112.

English, Abigail. 2000. "Reproductive Health Services for Adolescents: Critical Legal Issues." Obstetrics and Gynecology clinics of North America 27: 195–211.

English, Abigail, and Morreale, Madlyn. 2001. "A Legal and Policy Framework for Adolescent Health Care: Past, Present, and Future." Houston Journal of Health Law & Policy 1: 63.

Ginsberg, Karyn, and Slap, Gail. 1995. "Adolescents' Perceptions of Factors Affecting Their Decisions to Seek Health Care." Journal of the American Medical Association 273: 1913–1918.

Griswold v. Connecticut. 381 U.S. 479 (1965).

Hartman, Rhonda G. 2001. "Adolescent Decisional Autonomy for Medical Care: Physician Perception and Practices." University of Chicago Law School Roundtable 8: 87.

Hawkins, Lisa Ann. 1992. "Living Will Statutes: A Minor Oversight." University of Virginia Law Review 78: 1581.

Holder, Angela R. 1985. "Minors' Rights to Consent to Medical Care." Journal of the American Medical Association 257: 3400–3402.

Jackson v. A Woman's Choice. 503 SE.2d 422, 130 NC App. 590 (1998).

Jackson, Shelley, and Hafemeister, Thomas L. 2001. "Impact of Parental Consent and Notification Policies on the Decisions of Adolescents to be Tested for HIV." Journal of Adolescent Health 29: 81–93.

Jacobstein, C. R., and Baren, J. M.. 1999. "Emergency Department Treatment of Minors." Emergency Medical Clinics of North America 17: 341–352.

Katerberg, Robert J. 1998. "Institutional Review Board, Research on Children, and Informed Consent of Parents: Walking the Tightrope between Encouraging Vital Experimentation and Protecting Children's Rights." Journal of College and University Law 24: 545.

Kipke, Michelle, and Hein, Karen. 1990. "Acquired Immunodeficiency Syndrome in Adolescents." Adolescent Medicine: State of the Art Reviews 1(3): 429–449.

Kun, Joan Margaret. 1996. "Rejecting the Adage 'Children Should Be Seen and Not Heard': The Mature Minor Doctrine." Pace Law Review 16: 423.

Lantos, John, and Miles, Steven. 1989. "Autonomy in Adolescent Medicine: A Framework for Decisions about Life-saving Treatment." Journal of Adolescent Health Care 10: 460–466.

Leiken, Sanford. 1993. "The Role of Adolescents in Decisions concerning Their Cancer Therapy." Cancer 71: 3342–3346.

Leitenberg, Harold, and Saltzman, Heidi. 2000. "A Statewide Survey of Age at First Intercourse for Adolescent Females and Age of Male Partners." Archives of Sexual Behavior 29: 203–215.

McGlothin v. Bristol Obstetrics. WL 65459. Tenn. App. (1998).

Novak v. Cobb County–Kennestone Hospital Authority. 74 F.3d 1173 (11th Cir. 1996).

Parham v. J.R. 442 U.S. 584 (1979).

Planned Parenthood Affiliates of California v. Van de Kamp. 181 Cal. App. 3d 245, 226 Cal. Rptr. 361 (1986).

Planned Parenthood Association of Kansas City v. Ashcroft. 462 U.S. 476 (1983).

Planned Parenthood Association of Missouri v. Danforth. 428 U.S. 52 (1976).

Powers v. Floyd. 904 SW.2d 713. Tex. App. (1995).

Protection of Pupil Rights Amendment. U.S. Code. Vol. 20, sec. 1232h34 CFR Part 98. (1978).

Public Health Service Act. U.S. Code. Vol. 42, secs. 300–300a(8). (1970 as amended 1988).

Remafedi, Gary. 1987. "Male Homosexuality: The Adolescent's Perspective." Pediatrics 79: 326–330.

Remafedi, Gary. 1999. "Sexual Orientation and Youth Suicide." Journal of the American Medical Association 282: 1291–1292.

Roe v. Wade. 410 U.S. 113 (1973).

R. J. D. v. Vaughn. 572 So 2d 1225. Ala (1990).

Saharsky, Nicole A. 2001. "Consistency as a Constitutional Value: A Comparative Look at Age in Abortion and Death Penalty Jurisdictions." Minnesota Law Review 85: 119.

Silverstein, Helena. 2002. "Inconceivable?" Law and Inequality 20: 141.

Society for Adolescent Medicine. 1997. "Confidential Health Care for Adolescents: Position Paper of the Society for Adolescent Medicine." Journal of Adolescent Health 21: 408–415.

Traugott, Isabel, and Alpers, Ann. 1997. "In Their Own Hands: Adolescents' Refusal of Medical Treatment." Archives of Pediatrics & Adolescent Medicine 51: 922–927.