Youth health research ethics: time for a mature‐minor clause?

Abstract

Research into adolescent health issues is hampered by absolute requirements for parental consent. Society's recognition of adolescents’ autonomy and decision‐making capacity has been embodied in the legal recognition of the mature minor's right to make decisions on matters affecting his or her life. Psychological research indicates that young people from 14 years have decision‐making capacity. US and UK research ethics guidelines acknowledge the mature‐minor principle, but Australian guidelines are out of step with international practice. An absolute requirement for parental consent in Australian research ethics guidelines is potentially unethical if it denies mature adolescents’ autonomy and is a barrier to participation, study validity and improved health outcomes through research findings. There are grounds for considering a mature‐minor clause in the National Health and Medical Research Council research ethics guidelines, particularly in the context of youth participation in minimal‐risk research.

Development of youth friendly family medicine services in Bosnia and Herzegovina: protocol for a cluster randomized controlled trial

“…In order to respect this confidentiality, it was important that young people recruited for the study could consent to participate without asking their parents (Haller et al 2005). As previous experience in several countries has shown, young people from the age of 15 years are capable of consenting to participation in a low risk project like this one on their own (Sanci et al 2004). In addition, the YFHS-WHO + questionnaire used in the study was validated for young people from the age of 15 years to 24 years (Haller et al 2012).…”

Australian Aboriginal Birth Cohort study: follow-up processes at 20 years

“…As the participants were expected to be aged 16-19 years and some were likely to have their own children, the "mature minor" rule [14] was adopted in line with Guidelines for the General Consent of the RDH. The mature minor rule allows a child (under 18 years of age) with sufficient intellectual development and capacity to understand the nature and effect of the relevant treatment to be capable of giving consent.…”

Decisional Capacity Among Minors With HIV: A Model for Balancing Autonomy Rights With the Need for Protection

“…The American Academy of Pediatrics (1995) developed specific language and guidelines to assist physicians in obtaining informed consent, parental permission, child assent, and addressing conflict. Efforts to include children in medical decisions as developmentally appropriate are resulting in changes in practice guidelines and ethical standards (Perez-Carceles, Osuna, & Luna, 2002; Sanci, Sawyer, Weller, Bond, & Patton, 2004). The salience of the issue is underscored by the empirical evidence that the United States health care system often fails to meet the needs of children with life threatening conditions and their families (Browning & Solomon, 2005).…”

“…Evan and Zeltzer (2005) note little research exists on challenges that specifically impact adolescents especially when related to forms of treatment. In some countries, laws that define minors’ rights are changing from delineations based on specific age markers and parental consent to the inclusion of additional factors such as maturity and situational risk related to medical research and treatment (Sanci, Sawyer, Weller, Bond, & Patton, 2004). As a result, conflicts between various laws and medical ethics guiding practice standards related to the rights of minors are being identified (Campbell, 2006).…”