Related Experiment Video

Updated: Mar 7, 2026

A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research
08:42

A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research

Published on: July 31, 2017

8.9K

An Observational Study of Children's Involvement in Informed Consent for Exome Sequencing Research

Victoria A Miller1,2, Allison Werner-Lin2, Sarah A Walser2

  • 11 The Children's Hospital of Philadelphia, PA, USA.

Journal of Empirical Research on Human Research Ethics : JERHRE
|February 22, 2017
PubMed

Insights

Children

Area of Science:

  • Pediatric Research Ethics
  • Genomic Medicine

Background:

  • Informed consent in pediatric research is complex.
  • Exome sequencing involves genetic data with long-term implications.
  • Understanding children's roles in consent is crucial for ethical research.

Purpose of the Study:

  • To analyze children's participation in exome sequencing consent discussions.
  • To investigate the link between provider/parent communication and child involvement.
  • To identify strategies promoting children's engagement in research decisions.

Main Methods:

  • Analysis of 44 audiotaped consent sessions for exome sequencing research.
  • Participants: Children aged 8-17 years from five cohorts.
  • Sessions were transcribed and coded to assess child and provider communication.

Main Results:

  • Providers actively facilitated child involvement in 73% of sessions.
  • Most children (75%) verbally participated in the consent process.
  • Provider facilitation strongly correlated with increased child participation.

Conclusions:

  • Children can be actively involved in exome sequencing consent.
  • Strategies like soliciting opinions and questions enhance engagement.
  • Respecting children's input fosters ethical research participation.

Keywords:
assentdecision makingethicspediatricsresearch

More Related Videos

An Experimental Analysis of Children's Ability to Provide a False Report about a Crime07:36

An Experimental Analysis of Children's Ability to Provide a False Report about a Crime

Published on: May 3, 2016

9.1K
Working with Human Tissues for Translational Cancer Research07:48

Working with Human Tissues for Translational Cancer Research

Published on: November 26, 2015

10.4K

Related Concept Videos

Ethics in Research01:56

Ethics in Research

Today, scientists agree that good research is ethical in nature and is guided by a basic respect for human dignity and safety. However, this has not always been the case. Modern researchers must demonstrate that the research they perform is ethically sound.
26.1K
Naturalistic Observations02:30

Naturalistic Observations

If you want to understand how behavior occurs, one of the best ways to gain information is to simply observe the behavior in its natural context. However, people might change their behavior in unexpected ways if they know they are being observed. How do researchers obtain accurate information when people tend to hide their natural behavior? As an example, imagine that your professor asks everyone in your class to raise their hand if they always wash their hands after using the restroom. Chances...
17.9K
Observational Studies01:11

Observational Studies

Observational studies are a type of analytical study where researchers observe events without any interventions. In other words, the researcher does not influence the response variable or the experiment's outcome.
There are three types of observational studies – Prospective, retrospective, and cross-sectional.
Prospective Study
Prospective studies, also known as longitudinal or cohort studies, are carried out by collecting future data from groups sharing similar characteristics. One...
11.3K
Bioavailability Study Design: Healthy Subjects Versus Patients01:15

Bioavailability Study Design: Healthy Subjects Versus Patients

Bioavailability studies are essential for evaluating a drug's therapeutic efficacy and understanding its absorption patterns under various physiological conditions. Conducting such studies on target patient populations provides more relevant data by simulating real-world disease states. However, practical challenges often necessitate the use of young, healthy adult volunteers as study subjects.Patients may exhibit altered drug absorption patterns due to the effects of the disease itself,...
195
Types of Biopharmaceutical Studies: Controlled and Non-Controlled Approaches01:23

Types of Biopharmaceutical Studies: Controlled and Non-Controlled Approaches

Biopharmaceutical studies constitute a vital field aiming to enhance drug delivery methods and refine therapeutic approaches, drawing upon diverse interdisciplinary knowledge. In research methodologies, the choice between controlled and non-controlled studies significantly influences the study's reliability and accuracy.
Non-controlled studies, commonly employed for initial exploration, lack a control group, rendering them susceptible to biases and external influences. In contrast,...
510
Blind Procedures02:07

Blind Procedures

Ideally, the people who observe and record the children’s behavior are unaware of who was assigned to the experimental or control group, in order to control for experimenter bias. Experimenter bias refers to the possibility that a researcher’s expectations might skew the results of the study. Remember, conducting an experiment requires a lot of planning, and the people involved in the research project have a vested interest in supporting their hypotheses. If the observers knew which...
13.8K