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Davies, Hugh; Munday, Rosie; O'Reilly, Maeve; Hamilton, Catriona Gilmour; Ardahan, Arzhang; Kolstoe, Simon E.; Gillies, Katie – Research Ethics, 2023
Research consent processes must provide potential participants with the necessary information to help them decide if they wish to join a study. On the Oxford 'A' Research Ethics Committee we've found that current research proposals mostly provide adequate detail (even if not in an easily comprehensible format), but often fail to support decision…
Descriptors: Research, Informed Consent, Participation, Decision Making
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Wheeler, Anne C.; Wylie, Amanda; Raspa, Melissa; Villagomez, Adrienne; Miller, Kylee; Edwards, Anne; DeRamus, Margaret; Appelbaum, Paul S.; Bailey, Donald B., Jr. – Journal of Autism and Developmental Disorders, 2020
Although informed consent is critical for all research, there is increased ethical responsibility as individuals with intellectual or developmental disabilities (IDD) become the focus of more clinical trials. This study examined decisional capacity for informed consent to clinical trials in individuals with fragile X syndrome (FXS). Participants…
Descriptors: Informed Consent, Genetic Disorders, Intellectual Disability, Decision Making
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O'Farrelly, Christine; Tatlow-Golden, Mimi – European Early Childhood Education Research Journal, 2022
Formal consent for children's research participation legally resides with adults, and guidelines typically recommend consulting children about their participation only from 7 years of age. How can researchers support younger children's informed decision-making about their research participation, particularly in larger-scale studies without…
Descriptors: Young Children, Informed Consent, Decision Making, Research
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Ho, Portia; Downs, Jenny; Bulsara, Caroline; Patman, Shane; Hill, Anne-Marie – British Journal of Learning Disabilities, 2018
Background: People with intellectual disability encounter substantial healthcare discrepancies, yet are under-represented in research. While people with intellectual disability can make valuable contributions to research and consequently improve their quality of life, researchers encounter multiple challenges including them in research. One…
Descriptors: Intellectual Disability, Informed Consent, Injuries, Research
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Goodrich, Kristopher M.; Luke, Melissa – Journal for Specialists in Group Work, 2017
This article provides a primer for researchers exploring ethical issues in the research of group work. The article begins with an exploration of relevant ethical issues through the research process and current standards guiding its practice. Next, the authors identify resources that group work researchers can consult prior to constructing their…
Descriptors: Ethics, Research, Group Activities, Informed Consent
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Chávez, Noé Rubén; Williams, Camille Y.; Ipp, Lisa S.; Catallozzi, Marina; Rosenthal, Susan L.; Breitkopf, Carmen Radecki – Research Ethics, 2016
Altruism is a well-established reason underlying research participation. Less is known about altruism in adolescent-parent decision-making about clinical trials enrolling healthy adolescents. This qualitative investigation focused on identifying spontaneous statements of altruism within adolescent-parent (dyadic) discussions of participation in a…
Descriptors: Altruism, Sexuality, Parent Child Relationship, Adolescents