A 14-year-old with significant intellectual and physical developmental impairments presents to her pediatrician’s office for an annual physical exam. Her family brings up the increasing challenges of providing menstrual care for their daughter. They feel this is causing her significant distress and would like to discuss options, including permanent contraception, to prevent menstruation as well as unwanted pregnancy.
Over the last two decades, there have been significant advances in medical and surgical options available for contraception and management of menses for individuals, including those with intellectual developmental disorder (IDD).
A new AAP clinical report from the Committee on Bioethics and Council on Children with Disabilities frames the ethical, legal and medical issues of permanent contraception in children, adolescents and young adults with IDD. It also makes recommendations to providers who are contemplating permanent contraception therapies in this population, emphasizing the use of reversible and minimally invasive treatments when possible.
The report Examining Permanent Contraception for Children, Adolescents, and Young Adults with Intellectual Developmental Disorder: Ethical, Legal, and Medical Considerations is available at https://doi.org/10.1542/peds.2024-068955 and will be published in the November issue of Pediatrics.
Legal considerations
The clinical report reviews the history of involuntary sterilization of individuals with IDD to minimize the perceived burden on society and caregivers rather than to address the individuals’ best interests.
In reaction to abuses, state and federal law and judicial rulings have tightly restricted access to permanent contraception for minors with IDD, as they are a vulnerable population at risk for mistreatment, abuse and marginalization. In general, such regulations recognize individuals’ right to privacy and control over their reproductive future, but these rights vary from state to state.
Although developed to protect them, these legal restrictions have limited children, adolescents and adults with IDD and their families from accessing care that may be in their best interests.
Ethical considerations
Discussions regarding permanent contraception for individuals with IDD require an understanding of informed consent.
The goal of informed consent is to protect and promote an individual’s interests throughout the medical decision-making process. The capacity of those with IDD to participate meaningfully in medical decision-making depends on their functional status, the presentation of the information and the complexity and urgency of the medical situation.
For those with limitations in decisional capacity, health care providers seek informed permission for medical interventions from surrogates, and when possible, assent from the patients.
Medical considerations
When surrogate decision-makers request permanent contraception for minors with IDD, it is important to investigate the reason for the request, e.g., fears of emerging sexuality, risk of sexual abuse, menstrual hygiene or fertility control.
Multiple therapeutic options are available for behavioral, contraception and menstrual management with different risk profiles, efficacy and invasiveness. In exploring these treatment options, it is important to promote the least invasive and restrictive alternative.
Permanent contraception may be considered after less-invasive strategies are pursued.
Patient preferences
In considering the preferences of individuals with IDD, there are two key considerations: their capacity to make decisions about sexual activities, including sexual intercourse, and their capacity to parent a child.
Individuals with an intellectual disability may be able to consent to sexual intercourse. In addition, many adults with intellectual disability desire to and can parent safely with appropriate family and community supports. For these individuals, permanent contraception violates their interests, and reversible forms of contraception would be appropriate.
It is important to protect the future fertility of adolescents and young adults by counseling them and their surrogates regarding reversible interventions to manage concerns of menstrual hygiene as well as the need for contraception for patients who can consent to sexual intercourse.
Recommendations
The following are among the recommendations in the clinical report.
- Providers should understand the history of involuntary sterilization in the United States as a framework for understanding the current restrictions.
- Providers should work to understand the rationale behind requests for permanent contraception.
- Permanent contraception may be considered as one option along the continuum of care for menstrual and fertility management.
- Medical decision-making should be patient-centered, with consideration of what is in the individual’s best interest.
- If long-term control of fertility is desired, the risks and benefits of long-acting reversible contraception vs. permanent contraception should be discussed with a preference for the lowest-risk and least-restrictive option.
- Providers should be aware of the ethical standards at their hospital or clinic and legal standards in their state regarding requests for permanent contraception for individuals with IDD.
Dr. Geis is a lead author of the clinical report and a former member of the AAP Committee on Bioethics.
