Ethical Issues in Adolescent Consent for Research

Lind, Candace; Anderson, Beverly L.; Oberle, Kathleen

doi:10.1191/0969733003ne632oa

Cited by 30 publications

(28 citation statements)

References 20 publications

(35 reference statements)

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“…Assent is supposed to be a middle ground between consent and not being involved in the consent process. 20 Assent is an interactive process between the child and adults, and requires that the child has been informed about what is going to happen and has agreed to the procedure. The child will have some control regarding choices, although others make the decisions.…”

Section: Levels Of Decisionmentioning

confidence: 99%

Decision Making in Paediatric Care: an overview with reference to nursing care

Hallström

Elander²

2005

Nurs Ethics

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The purpose of this overview of previous articles on decision-making in paediatric care was to identify important aspects of possible use in clinical practice and to obtain a base for future research. A literature review was undertaken utilising snowball sampling to identify papers due to the diversity within the area of decision-making in paediatric care. The databases PubMed and CINHAL were used. The search was limited to articles published in English during the period 1994 -2004. The analysis entailed a series of comparisons across articles focusing on major areas of inquiry and patterns of results. Various levels of decision-making are described, as these seem to form a basis for how decisions are made. Concepts found to be of importance for decision-making are described under the following headings: competence, the child's best interests, knowledge, values and attitudes, roles and partnership, power and economy. Further research is suggested.

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Section: Levels Of Decisionmentioning

confidence: 99%

Decision Making in Paediatric Care: an overview with reference to nursing care

Hallström

Elander²

2005

Nurs Ethics

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“…Although federal regulations allow parents to override a minor’s assent in certain cases of therapeutic benefit hard to obtain outside of research, it is ethically and practically problematic to compel or pressure a teen to participate in research when she doesn’t want to. 22 Notably, almost a third of teens reporting pressure said it came from doctors, nurses or the research team, and some expressed concern about disappointing the researchers. Researchers should be careful to help teens appreciate the value of their participation without creating an atmosphere where they feel pressured to enroll in research.…”

Section: Discussionmentioning

confidence: 99%

Assent in Research: The Voices of Adolescents

Grady

Wiener

Abdoler

et al. 2014

Journal of Adolescent Health

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Purpose Adolescents join clinical research after investigators obtain their positive agreement, or ‘assent.’ Although intended to respect adolescents, little is known about the views of adolescents or their parents regarding assent or research enrollment decisions. This study aimed to better understand perspectives of adolescent research participants and their parents about assent and parental permission. Methods Structured interviews were conducted with 13 through 17 year old teens, enrolled in clinical research at NIH or Seattle Children’s Hospital, and separately with one parent. Results 177 adolescent-parent pairs were interviewed. Teens were well distributed by age and gender, represented a wide variety of research and illnesses ranging in severity from mild to life-threatening; 20% were healthy volunteers. Teens and parents were generally satisfied with the assent/permission process. Normally, they made the enrollment decision together and teens wanted parents’ input and support. About 25% of teens reported pressure to enroll, from parents or relatives, but also from doctors/nurses/research teams. Only 2% of teens preferred not to sign a consent form. Conclusions Despite some differing views about how decisions should be made, the current assent/permission process is perceived as satisfactorily respectful by most teens in research. Many teens want to sign consent forms and teens’ signatures should generally be sought. Flexible guidance allows research teams and IRBs to customize the assent process for teens in particular studies in order to facilitate an appropriate balance between giving teens a voice reflective of their emerging independence and enabling supportive collaboration with parents.

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“…There is an implied legal obligation to obtain assent, as assent is the means to get the child's perspective to establish their "best interests" required by s 28(2) of the Constitution for every matter concerning the child [12]. The NHA means that the standard for persons under the age of majority is not necessarily assent but rather that when children have sufficient comprehension it is their consent that shall be required [28]. That is, the Act requires persons who are legal minors to consent rather than assent if they have sufficient comprehension.…”

Section: Discussionmentioning

confidence: 99%