Minors and their Right to Consent/ Privacy
Minors and their Right to Consent/ Privacy
Minors have a right to privacy just like adults do. This privacy cuts across all aspects of a minor’s life, but is at times difficult to grasp or define because minors are generally under the care of parents or guardians. Jackson, Burns and Richter (2014) observe that there are no clear, direct or comprehensive policies and legislation on minors’ rights and privacy in health care provision. In the first place, there is no universal definition of a minor; its meaning changes from one jurisdiction to another. In this paper, the concept refers to a young person of the ages 3 to 19 years. The common assumption is that parents and guardians understand all the rights of minors and know the limits of consent they can give. In most cases, this assumption is not true. The human society keeps changing, and laws evolve with time. Therefore, human rights have undergone constant reinterpretation in response to emerging issues and contexts. The aim of this paper is to discuss the current issues on the minors’ rights, informed consent, and confidentiality in health care treatment. The paper concludes by providing a summary of issues discussed and suggestions to improve minors’ privacy.
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Understanding of consent and privacy
Consent refers to a voluntary agreement for treatment. Informed consent implies that the patient understands their condition, the nature of the proposed treatment and related alternative interventions, and fully knows the risks and benefits of the proposed treatments and interventions (Feierman, Lieberman, Schissel, Diller, Kim & Chu, 2015). Informed consent recognizes the inherent dignity of human beings as individuals. It also provides a framework to promote professionalism in medical practice. Both consent and privacy are issues of ethics as opposed to the law. However, as ethical principles, they receive reinforcement from the law and evolving policies.
Consent in the medical profession takes many forms. It can be verbal or written agreements as well as gestures such as nodding or giving out one’s arm for injection. The act of a patient visiting the hospital to seek specific treatment often implies consent. Failing to obtain informed consent is a type of malpractice which is punishable by law. Privacy or confidentiality mandates that a doctor, or anyone with legal access to patients and health information, should not disclose the medical information of a patient without the permission of the person who consented to treatment. In paediatrics, the responsibility for giving informed consent falls completely on the parents (Pascut & Aluas, 2016). However, the physician defines the content and extent of consent based on the nature of treatment sought and about existing federal and state laws. It also entails implied consent which is obtained automatically because the parent has brought their child for treatment.
Informed consent in the treatment of minors is majorly concerned with three aspects of health care. First, it defines those health services that a minor can seek without the consent of the parent or guardian as opposed to those that parental consent is mandatory. Second, it explores areas in which a parent or guardian seeks access to medical information of a minor. Third, it is concerned with aspects in which a doctor must seek the minor’s consent before sharing the minor’s medical information. Ethical dimensions in health care are constantly updated based on evolving laws, policies and practices.
Legislations on minors’ right to consent and privacy
The aim of all laws is to safeguard the rights and privileges of every individual irrespective of age or other demographic characteristics. Therefore, laws try to define right and wrong in all aspects of human life, including health care. There are laws that define how health care practitioners must administer services to minors. The American Academy of Paediatrics (AAP) (2003) observes that in the United States, the federal and state laws on minors’ right to medical confidentiality are often vague. Nevertheless, the governments in both levels have increasingly apportioned minors with the rights to make decisions about their health care. Some of these laws have received criticism for seeking to undermine the authority of parents. Some parents still feel the need to maintain authority over their children. Sometimes such strict authoritarianism in parenting acts as a barrier to health care seeking among young people. However, the legislations have come in response to the increasing recognition that not all families encourage free communication.
In some cases, seeking parental consent may, in fact, act as a barrier to reception of health care service by minors. Parents may feel the need to keep family secrets. Therefore, they may not allow their children to seek care on their own, lest they should be found to have crossed some moral grounds. In such situations, privacy as part of ethical practice entails barring the parent from the medical information of the minor. Some examples of these unique cases identified by AAP (2003) are abortion, birth control, screening for HIV and treatment for AIDS and other STIs. They also include cases of mental health, substance abuse, rape, incest and other forms of sexual abuse. The caveat in the above scenarios is that the minor must be old enough to understand their health condition and the implications of consent. The basis of this provision is the Mature Minor Doctrine legislation which defines the terms for relying solely on the minor’s consent in medical treatments (AAP, 2003). Such laws regard the minor as an adult capable of making responsible decisions.
Despite numerous legislations, health care professionals still hold great discretion over the disclosure of minors’ medical information. The fact that health care professionals have a greater role to play than, say, parents in matters of children’s informed consent and privacy, is a good thing in itself. These professionals are better able to elicit cooperation among minors because they (professionals) are impassioned and objective in their work; they do not harbour any vested interests, and they are trained to tackle problems affecting young people. In most cases, the doctor, the minor and the parent or guardian enter into a verbal agreement on confidentiality. In this agreement, the three parties involved affirm that the information that the minor will share with the doctor will remain confidential unless the physician deems from such information that the minor runs the risk of self-harm or bringing harm to others (AAP, 2003). There are specific provisions on the limitations of such an agreement.
Under the Health Insurance Portability and Accountability Act (HIPAA), adolescents who have attained the legal age, as well as emancipated minors, are eligible to give consent individually (US Congress, 1996). On the other hand, parents and guardians are responsible for giving consent on behalf of minors who are non-emancipated and those who have not attained the legal age. Under this provision of representation, these adults can have full access to protected medical information of minors. HIPAA also recognizes the unique cases in which minors have a right to consent to treatment. An additional provision allows a minor to give consent if the treatment can be administered legally without parental consent. Moreover, in emergency cases where delayed parental consent may threaten the life of a minor, doctors can waive consent to treatment (McNary, 2014). In such a scenario, if able, the minor’s consent is valid.
Minors’ treatment and confidentiality in health care
The privacy of medical information of every patient, irrespective of age or other differences, is guaranteed in law (Hickey, 2007). In most cases, when a minor has individually consented to treatment, they also have a right to make decisions on the disclosure of their medical information. In general, minors have limited privacy on sensitive medical procedures such as family planning, abortion, the treatment of infections transmitted through sexual activities, and the effects of substance abuse. However, the application of these laws varies across states.
Confidentiality of health care information for minors finds support in some federal and state-based health care organizations. For instance, according to Loxterman (1997), the American Medical Association confidentiality is crucial in the treatment of minors. AMA urges physicians to engage parents when dealing with health cases involving minors. However, the basis of parental involvement must be on the need to protect the health interests of the young patient. If the physician deems that parental notification may hinder a minor’s care, then he or she is legally bound to forego parental involvement. Parents may have othe agendas or interests when it comes to minors’ health care, such as the need to protect the family image. They may also be interested in consent situations to rein in more authority on their children.
Similarly, The American Academy of Paediatrics recommends that the physician must explain the policy on confidentiality to the parent right from the start of the professional relationship. Advisable, the physician can make this explanation both verbally and in writing. On its part, the American College of Physicians argues that physicians must remain abreast on all state and federal laws that pursue protection of the rights of minors as patients. The ACP also cautions that a physician must never disclose information regarding a minor’s health without the parent’s consent. The only exception, in this case, is where a court order requires the physician to release the information, and when the release of the said information is in the interest of protecting others. Moreover, The American Public Health Association posit that the privacy of health care information should be driven by the need to protect the needs of minors. In this case, physicians must protect the privacy of minors, including those who are sexually active and those who seek treatment for STIs and substance abuse related conditions.
Abortion and minors’ privacy
Abortion is a controversial issue the world over. It carries both social and political consequences. In the midst of all the politics around abortion, there are the real health challenges involved for especially women and girls. Pregnant women or minors may seek an abortion for several reasons. However, irrespective of the justification, abortion continues to attract controversial responses from different sections of society. The situation is worse if a minor is seeking to get an abortion. Kost and Henshaw (2014) estimate that there were over 600,000 documented cases of teenage (15-19 years) pregnancies in the United States in 2010. Of these pregnancies, 30% ended in abortion (Kost & Henshaw, 2014). These figures show there is a relatively high rate of abortion among teens in the US. What are the ethical implications involved in abortion among minors?
According to Planned Parenthood (n.d), most states in the United States require that a minor notifies parents before getting an abortion. For instance, in states like Arkansas, Arizona, Alaska, Colorado, Florida, and Georgia, among others, at least one parent must be notified and must give consent before an abortion. The only exception, in this case, is if court grants that the minor does not notify the parents either before or after abortion. This legal provision is known as a judicial bypass. Others simply mandate parental notification after a minor has had an abortion. However, in Hawaii, Washington DC, Maine, Nevada, New Jersey, New Mexico and New York, among others, no parental involvement is required in abortion by minors. These states do not require parental consent for abortion; they only require the minor’s consent. The American Public Health Association (APHA) (2011) argues that laws that mandate parental involvement put pregnant minors at risk by delaying treatment. Therefore, APHA recommends that federal, state and local policymakers and courts should stop enforcing parental involvement as a requirement for getting an abortion by minors.
Birth control and minors’ privacy
Sexual activity among teens in the United States is relatively high. In 2013 alone, over 46% of high school students reported that they had engaged in sexual intercourse within a period of twelve months (Hamilton, Martin, Osterman & Curtin, 2014). Of these, over 33% had had sex in the last three months. These figures indicate a high level of sexual activity among minors in America. The good news is that since the 1990s, there has been a decrease in teen pregnancy, and this is mainly attributable to increased use of contraceptives among girls (Kann et al., 2014).
There are many ethical debates when it comes to minors engaging in birth control. Parents get worried when there is a rise in the trends of birth control seeking behaviour among minors. Most of these debates often take the trajectory of gender parity. For instance, while no one would question a teenage boy for buying condoms, most people would most likely raise eyebrows when they see a teenage girl buying contraceptives. Social attitudes still shape most of the ethical views on issues of sex and sexuality.
The Guttmacher Institute (2017a) states that recent court rulings in the US have extended minors’ constitutional right to privacy in their decisions to obtain contraceptives. Accordingly, at least 21 states in America explicitly allow minors to consent to contraceptive services. Another 25 states require minors’ consent only in some circumstances involved in obtaining of contraceptives. One of these circumstances is when the doctor believes that there may be a potential health hazard. It also applies when the minor is married and if the minor is a parent. Another circumstance is if the minor is pregnant, a high school graduate, of minimum age, demonstrates maturity or when a specialized professional has referred the minor (Guttmacher Institute, 2017a). Nogales (2012) reports that based on research there is evidence to show that requiring parental consent for minors’ access to contraception results in the overall delay in seeking of reproductive health services. According to her, such laws do not play any role in reducing sexual activity among minors. As a result, there is a general opposition among health organizations in the United States against mandatory parental involvement as a precondition for minors’ seeking contraception.
Screening for HIV/AIDS, STIs and minors’ privacy
The Centres for Disease Control and Prevention (CDC) (2015) estimates that at least 4% of those who are HIV-positive in America fall in the age of between 13 and 19 years. CDC (2015) attributes the prevalence of HIV and other STIs among the youth to inadequate sex education, risk behaviours, high rates of STDs in general, the stigma around HIV and feelings of social isolation. These factors also play a role in health-seeking behaviour among minors. Young people are more prone to stigma and isolation when they suspect they have infections of such ailments than older people.
According to the Guttmacher Institute (2017b), all the US states require minors to consent to screen for STIs. Of these states, at least thirty-two include HIV screening in this requirement. The other eighteen states require that doctors inform parents about a minor’s seeking of STI services. This requirement includes informing the parent especially if the minor tests positive for HIV. Culp and Caucci (2013) have found that HIV pre-exposure prophylaxis without parental consent is unclear. They recommend that there need to evaluate state laws that support the provision of clinical interventions for HIV prevention. In most cases, minors would rather forego reproductive health check than endure holding an uncomfortable conversation with parents and physicians about their active sex life.
Mental health and minors’ privacy
Mental health problems among minors range from severe mental disorders to psycho-social distresses. Stagman and Cooper (2010) aver that at least one in every five children in the United States suffers from a diagnosable mental disorder. Moreover, teens of ages 12 to 17 suffer from severe emotional problems that tend to result in psychological abnormalities. Based on the nature of the mental health issue, many factors influence decisions on consent and privacy of patient records. Psychologists, doctors, and social workers must be aware of the specific challenges and requirements for the different mental health cases. Like most of the other laws regarding minors, decisions on mental health also vary across states. Where the law grants a minor the right to give consent, the physician must still gauge whether or not the minor is mentally capable to properly understand the details of consent and the implications on confidentiality.
Substance abuse and minors’ privacy
Most people who use drugs begin as teens. The National Institute on Drug Abuse (2015) opines that at the highest percentage of those who abuse substances in America are young people aged 18 to 20 years. However, NIDA (2015) reports that underage drinking and smoking is on a sharp decline. Some of the contributors to a reduction in substance use and abuse include health education, counselling, and treatment for minors. However, these interventions are fraught with ethical dilemmas that professionals who provide care to minors have to navigate carefully.
Physicians may learn about minors’ substance abuse directly from the minors who come to seek treatment. If a physician comes across such information while screening for some other condition, he or she may have to find a way to broach the subject with the minor. The physician must then seek the minor’s consent to screening for substances in the system. There are also cases where parents suspect their children of abusing substances. However, when a young person visits a hospital or clinic for treatment related to substance abuse, the clinician must abide by state and federal laws in the handling of their medical information. The doctor should seek the minor’s consent before sharing the information with the parent. If the law does not mandate parental consent, the physician must share the parent’s concerns with the minor. However, the health professional may be forced to disclose the minor’s information to the parent if such disclosure serves the best interest of the young patient. For example, if the condition of the minor requires mandatory admission into a detoxification programme, the parent will have to know about it. In some cases, substance abuse could be as a result of other factors which pose a risk of suicide for a minor. In such a case, the doctor must involve the parent in the treatment of the minor.
Rape, sexual abuse, and minors’ privacy
Sexual abuse presents a more delicate issue in the treatment of minors. Minors often fall victim to sexual exploitation and rape out of curiosity they have sex. In the absence of proper sex education before and at the onset of puberty, this danger tends to get worse. Sexual experimentation among minors often brings about other emotional and psychological problems such as guilt and shame, identity crisis and the need for affection. Minors who are victims of rape may be shy or afraid to report their predicament for fear of shame or blame by parents. Therefore, it is important first to educate minors to report any suspicion of sexual abuse they may have. Secondly, physicians must create an environment in which young people feel safe to share all the details of their sexual experiences. Consequently, the minors’ consent to interventions on sexual abuse is crucial. Once the minor has given consent, the physician goes ahead to provide counselling and treatment. It is after care that the physician can then decide if the issue demands disclosure. In a case of rape, the disclosure of a minor’s health information may be demanded to support court proceedings. Whatever the circumstance, minors who are rape victims or victims of sexual abuse can be treated immediately without parental consent. In such cases, the minor’s consent is sufficient.
Minors with divorced parents and step-parents
Children are often the unintended victims of the negative outcomes of the break-up in the family unit in the context of divorce or parental separation. Obviously, there are many valid reasons why married couples will choose to divorce, but minors always tend to root for family unity. In cases where parents are divorced, and there is a requirement for parental consent, the parent with the legal custody of the minor is the one to provide representational consent. If each of the parents has equal shared custody, then either of them can give consent. If both parents refuse to take part in giving consent, the physician must try and convince them separately and fairly. If they still disagree, the physician can seek court intervention to provide consent for a minor’s treatment. In most states, step-parents do not have legal right to provide consent for a minor’s treatment. The caveat for this law is when the step-parent has formally adopted the child. The natural parent of the child may also provide written authorization of consent to the step-parent.
An emancipated minor is one who by law has is not under any form of parental care, custody, and control. The key defining aspect in emancipation is the fact that the minor is not likely to return to the parents. In a court-ordered emancipation, the emancipated minor enjoys the same rights as an adult (McNary, 2014). In a treatment scenario, the minor is supposed to inform the doctor about their emancipation status. The doctor then proceeds to verify by obtaining legal documentation for emancipation. After verification, the physician proceeds with the process of obtaining informed consent from the minor before giving treatment.
Challenges with informed consent
Some situations may make it difficult to obtain informed consent before administering treatment to a minor. A good example is when the patient is in pain and cannot take the time to listen or read the details of a consent form. Consent forms have numerous details that require a patient to read exhaustively before signing. A patient under duress from their health condition may have no option but to consent to treatment. Doctors must be wary of the potential liabilities that could arise if they do not find legal grounds to treat patients without informed consent. On the one hand, withholding treatment as the physician awaits parental consent could lead to adverse effects such as paralysis and death. Similarly, rushing to provide treatment could result in an invasion of privacy and lawsuits.
Another challenge stems from the fact that minors are mostly dependent on parents for payment of medical treatments. Therefore, even when minors are the only ones who give consent, there may be a need to inform the parent for the sake of payments. There is also the challenge of minors’ rights to refuse treatment. In most cases when one talks about informed consent, the key concern is to prescribe care that is in the best interest of the minor. This is a prescribed type of care from outside the world of children themselves. Adults (parents and physicians) feel responsible towards minors. While this is a good way to view children, it is also important to realize that minors, especially teenagers, also have the capacity to make decisions alone.
Lastly, consent, as applied in health care interventions, can be confusing at times. Informed consent purports to give people a choice. However, this choice is an illusion because sometimes people do not have a choice on whether or not to accept or reject treatment. Sickness is itself an imposition on the body; one cannot simply opt out from an illness. Therefore, informed consent only applies to those types of treatments in which a person does indeed have a choice. These include cases where there are more than one types of treatment for the same illness. In such situations, a patient can make choices based on their sense of preference and need.
Informed consent assumes that a patient fully understands their health condition, the proposed treatment and the potential risks and benefits of that treatment. On the other hand, privacy concerns ethical principles of the management and disclosure of patient information. Privacy should not be confused with secrecy. Secrecy implies withholding information from those who are entitled to know. However, privacy has to do with the protection of the dignity and individuality of the patient. State and federal laws regarding informed consent and privacy of medical information for minors are still evolving. The changes in the health care environment drive this evolution. There are new diseases are emerging. Human understanding of science has also increased the capacity to respond to both old and new health care challenges. These changes constantly require a review of existing policy and legal frameworks. In the midst of all these, there is a greater emphasis on ethics in health care service and practice. Ethics in health care are concerned with the preservation of life and the promotion of human dignity and professionalism. Legislations are being tailored to support ethics in health care practice as well. All medical professionals must constantly update themselves on emerging issues, rules and regulations in health care. Of course, minors may not be well equipped to weigh options and distinguish real from perceived benefits in health care decisions. However, children must feel that their voice is heard and respected in the treatment context. They must feel safe confiding in the health care professional. Above all, they must receive care based solely on their primary needs.
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