When Parents Request Nondisclosure: Rights of Adolescents to Access Their Health Information and Implications of the 21st Century Cures Act Final Rule.

AbstractDespite broad ethical consensus supporting developmentally appropriate disclosure of health information to older children and adolescents, cases in which parents and caregivers request nondisclosure continue to pose moral dilemmas for clinicians. State laws vary considerably regarding adolescents' rights to autonomy, privacy, and confidentiality, with many states not specifically addressing adolescents' right to their own healthcare information. The requirements of the 21st Century Cures Act have raised important ethical concerns for pediatricians and adolescent healthcare professionals regarding the protection of adolescent privacy and confidentiality, given requirements that chart notes and results be made readily available to patients via electronic portals. Less addressed have been the implications of the act for adolescents' access to their health information, since many healthcare systems' electronic portals are available to patients beginning at age 12, sometimes requiring that the patients themselves authorize their parents' access to the same information. In this article, we present a challenging case of protracted disagreement about an adolescent's right to honest information regarding his devastating prognosis. We then review the legal framework governing adolescents' rights to their own healthcare information, the limitations of ethics consultation to resolve such disputes, and the potential for the Cures Act's impact on electronic medical record systems to provide one form of resolution. We conclude that although parents in cases like the one presented here have the legal right to consent to medical treatment on their children's behalf, they do not have a corresponding right to direct the withholding of medical information from the patient.

Access to medically-assisted procreation: the withdrawal of paternal consent in the maze of law n. 40/2004.

Abstract: The law (No.40/2004) stipulates that consent to Medically Assisted Procreation (MAP) remains irrevocable post ovum fertilization. Cryo-preservation introduces complexities, enabling embryo implantation requests after a couple's separation and the dissolution of the original parenthood plan. Constitutional Court Ruling No.161 in 2023 affirmed that the prohibition of revoking consent to MAP aligns with the Italian Constitution and the jurisprudence of the European Court of Human Rights. This delicate equilibrium of conflicting interests upholds human freedom, allowing consent revocation prior to ovocyte fertilization. Permitting revocation until implantation could inflict more significant harm: the infertile woman can in fact miss the opportunity to become a mother, impacting her psychophysical well-being and freedom of self-determination. Moreover, the embryo loses the chance to live, remaining in cryopreservation, which violates its dignity. Addressing this issue requires thorough communication by medical profession-als to inform couples about the limitations on consent revocation. An element of objectivity in terms of standards and evidence-based guidelines, from which norms must originate, is of utmost importance. Relying on broadly shared rules, especially at the international level, is vital in light of the unremitting scientific advances in MAP, as in other areas of medicine, which will open up new opportunities for which current legal/regulatory frameworks are inadequate.

High-Risk Medicolegal Conditions in Pediatric Emergency Medicine.

The top 5 reasons for pediatric malpractice are cardiac or cardiorespiratory arrest, appendicitis, disorder of male genital organs, encephalopathy, and meningitis. Malpractice is most likely to result from an "error in diagnosis." Claims involving a "major permanent injury" were more likely to pay out money, but of all claims, only 30% result in a monetary pay out. Consideration of "high-risk misses" may help to direct a history, examination, testing, and discharge instructions.

Can Parents Restrict Access to Their Adolescent's Voice?: Deciding About a Tracheostomy.

Parents are the default decision-makers for their infants and children. Their decisions should be based on the best interests of their children. Differing interpretations of children's best interests may be a source of conflict. Providers' biased evaluations of patients' quality of life may undermine medicine's trustworthiness. As children mature, they should participate in medical decision-making to the extent that is developmentally appropriate. In this month's Ethics Rounds, physicians, a philosopher, and a lawyer consider parents' demand, supported by the hospital's legal department, that their 17-year-old son be excluded from a potentially life-and-death medical decision.

Resolving Disagreement: A Multi-Jurisdictional Comparative Analysis of Disputes About Children's Medical Care.

Recently, the English courts have dealt with a number high-profile, emotive disputes over the care of very ill children, including Charlie Gard, Alfie Evans, and Tafida Raqeeb. It is perhaps fair to say such cases have become a regular feature of the courts in England. But is the situation similar in other jurisdictions? If not, are there lessons to be learned from these jurisdictions that do not seem to need to call on judges to resolve these otherwise intractable disputes? We argue that many of the differences we see between jurisdictions derive from cultural and social differences manifesting in both the legal rules in place, and how the various parties interact with, and defer to, one another. We further argue that while recourse to the courts is undesirable in many ways, it is also indicative of a society that permits difference of views and provides for these differences to be considered in a public manner following clear procedural and precedential rules. These are the hallmarks of a liberal democracy that allows for pluralism of values, while still remaining committed to protecting the most vulnerable parties in these disputes-children facing life-limiting conditions.

When Does A Minor's Legal Competence To Make Health Care Decisions Matter?

In this article, I examine the role of minors' competence for medical decision-making in modern American law. The doctrine of parental consent remains the default legal and bioethical framework for health care decisions on behalf of children, complemented by a complex array of exceptions. Some of those exceptions vest decisional authority in the minors themselves. Yet, in American law, judgments of minors' competence do not typically trigger shifts in decision-making authority from adults to minors. Rather, minors' decisional capacity becomes relevant only after legislatures or courts determine that the default of parental discretion does not achieve important policy goals or protect implicated constitutional rights in a particular health care context and that those goals can best be achieved or rights best protected by authorizing capable minors to choose for themselves. It is at that point that psychological and neuroscientific evidence plays an important role in informing the legal inquiry as to whether minors whose health is at issue are legally competent to decide.

Ethical Issues Raised by the Media Portrayal of Adolescent Transplant Refusals.

Cases of adolescents in organ failure who refuse solid organ transplant are not common, but several have been discussed in the media in the United States and the United Kingdom. Using the framework developed by Buchanan and Brock for surrogate decision-making, I examine what role the adolescent should morally play when deciding about therapy for life-threatening conditions. I argue that the greater the efficacy of treatment, the less voice the adolescent (and the parent) should have. I then consider how refusals of highly effective transplant cases are similar to and different from refusals of other lifesaving therapies (eg, chemotherapy for leukemia), which is more commonly discussed in the media and medical literature. I examine whether organ scarcity and the need for lifelong immunosuppression justify differences in whether the state intervenes when an adolescent and his or her parents refuse a transplant. I argue that the state, as parens patriae, has an obligation to provide the social supports needed for a successful transplant and follow-up treatment plan, although family refusals may be permissible when the transplant is experimental or of low efficacy because of comorbidities or other factors. I conclude by discussing the need to limit media coverage of pediatric treatment refusals.

Informed consent approaches for clinical trial participation of infants with minor parents in sub-Saharan Africa: A systematic review.

BACKGROUND: Regulations are vague regarding the appropriate decision-maker and authority to consent for children of minor parents participating in clinical trials. In countries with high rates of underage mothers, such as in sub-Saharan Africa, this lack of guidance may affect the rights of potential paediatric participants already bearing increased vulnerability. It can also influence the recruitment and generalizability of the research. We provide evidence and discuss informed consent management in such cases to inform best practice. MATERIALS AND METHODS: We searched PubMed/MEDLINE, Embase, CINAHL, and Google Scholar for articles published up to March 2019. In total, 4382 articles were screened, of which 16 met our inclusion criteria. Studies addressing informed consent in clinical trials involving children with minor parents in sub-Saharan Africa were included. We performed descriptive and qualitative framework analyses. The review was registered in PROSPERO: CRD42018074220. RESULTS: Various informed consent approaches were reported. Articles supporting individual consent by minor parents based on emancipation or "mature minor" status lacked evidence in the context of research. National laws on medical care guided consent instead. When no laws or guidance existed an interpretation of the local decision-making culture, including community engagement and collaboration with local ethics committees, defined the informed consent approach. CONCLUSIONS: The review emphasises that the implementation of informed consent for children with minor parents may be variable and hampered by absent or ambiguous clinical trial regulations, as well as divergent local realities. It may further be influenced by the research area and study-specific risks. Clear guidance is required to help address these challenges proactively in clinical trial planning. We provided a set of questions to be considered in the development of an ethically acceptable informed consent approach and proposed information that should be integrated into international clinical trial guidelines.

For Victims of Fatal Child Abuse, Who Has the Right to Consent to Organ Donation?

In rare circumstances, children who have suffered traumatic brain injury from child abuse are declared dead by neurologic criteria and are eligible to donate organs. When the parents are the suspected abusers, there can be confusion about who has the legal right to authorize organ donation. Furthermore, organ donation may interfere with the collection of forensic evidence that is necessary to evaluate the abuse. Under those circumstances, particularly in the context of a child homicide investigation, the goals of organ donation and collection and preservation of critical forensic evidence may seem mutually exclusive. In this Ethics Rounds, we discuss such a case and suggest ways to resolve the apparent conflicts between the desire to procure organs for donation and the need to thoroughly evaluate the evidence of abuse.

"The Hopkins Mongol Case": The Dawn of the Bioethics Movement.

One of the earliest controversies in the modern history of bioethics was known at the time as "the Hopkins Mongol case," involving an infant with Trisomy 21 and duodenal atresia whose parents declined to consent to surgery. Fluids and feeding were withheld, and the infant died of dehydration after 15 days. The child's short life had a profound impact on the author's career and that of several others and ultimately led to changes in the care of children and adults with disabilities and the way difficult end-of-life decisions are made in US hospitals today. It also contributed to the growth of the modern bioethics movement and scholarship focused on pediatric bioethics issues.

Is consent causing confusion for clinicians? A survey of child and adolescent Mental health professional's confidence in using Parental Consent, Gillick Competence and the Mental Capacity Act.

All professionals engaged in clinical work should be competent to assess consent for the interventions they provide. This study assesses CAMHS clinicians confidence and knowledge in the various forms of consent and the number of minors admitted to mental health units in England under parental consent alone.An online questionnaire using vignettes of possible scenarios was sent to child and adolescent mental health practitioners in Tees Esk and Wear Valleys Trust. A freedom of information request was used to determine the number of young people admitted through parental consent.Thirteen of the 20 trusts contacted had no knowledge of the number of young people admitted under parental consent. A total of 93 participants completed the survey. Out of six vignettes, there were two where the majority of responses were discordant with current legal advice. Both of these vignettes considered the use of parental consent for admission to a mental health unit.This study provides further evidence to indicate that the current consent processes in CAMHS causes confusion for clinicians. There continues to be very few safeguards for children admitted under parental consent, with most trusts in England and Wales having no centralised knowledge of whether this is occurring and the numbers involved if it is.

Adolescent and Parent Perceptions about Participation in Biomedical Sexual Health Trials.

Given the burden of HIV and other sexually transmitted infections among adolescents who are legal minors, it is critical that they be included in biomedical sexual health trials to ensure that new prevention and treatment interventions are safe, effective, and acceptable for their use. However, adolescents are often not well represented in clinical trials. We provide an overview of the available evidence regarding adolescent and parent willingness for adolescents to participate in biomedical sexual health trials, parental involvement in the permission-consent process, management of differences and discord among adolescents and parents, and parental involvement throughout the study period. We also outline recommendations for current practice and areas for future research.

Case Comment: Re D (A Child) [2019] UKSC 42.

How (if at all) can the right to liberty of a child under Article 5 European Convention on Human Rights ('ECHR') be balanced against the rights of parents, enshrined both at common law and under Article 8 ECHR? Is there a limit to the extent to which parents can themselves, or via others, seek to impose restrictions upon their disabled child's liberty so as to secure their child's interests? This case considers the answers to these questions given by and the implications of the decision of the Supreme Court in September 2019 in Re D (A Child) [2019] UKSC 42.

Whether to Waive Parental Permission in HIV Prevention Research Among Adolescents: Ethical and Legal Considerations.

Critical ethical questions arise concerning whether studies among adolescents of new behavioral and biomedical HIV preventive interventions such as Pre-Exposure Prophylaxis (PrEP) should obtain parental permission. This paper examines the relevant regulations and ethical guidance concerning waivers of parental permission, and arguments for and against such waivers. Opponents of such waivers may argue that adolescent decision-making is "too immature" and that parents always have rights to decide how to protect their children. Yet requiring parental permission may put adolescents at risk, and/or limit adolescent participation, jeopardizing study findings' validity. This paper presents recommendations on when researchers and Institutional Review Boards (IRB) should waive parental permission, and what special protections should be adopted for adolescents who consent for themselves, e.g., assuring adolescent privacy and confidentiality, screening for capacity to consent, and identifying adolescents who are at elevated risk from study participation. We also present a series of specific areas for future research to design tools to help make these assessments, and to inform researcher and IRB decisions. These recommendations can help ensure that research is conducted that can aid adolescents at risk for HIV, while minimizing risks and protecting these individuals' rights as much as possible.