Giving Voice to Research Participants: Should IRBs Hear From Research Participant Representatives?

Hadskis, Michael

doi:10.1080/08989620701455209

Accountability in Research

2007

DOI: 10.1080/08989620701455209

|View full text |Cite

Giving Voice to Research Participants: Should IRBs Hear From Research Participant Representatives?

Michael Hadskis

Abstract: The current decision-making model for the review of human research contains inadequate mechanisms to ensure that the interests and perspectives of research participants are considered by Institutional Review Boards, whose decisions may profoundly affect the safety and well-being of participants. As a result, this model is far from being optimized to realize Institutional Review Boards' principal mandate and undermines the credibility of the research review process. This article proposes a procedural mechanism … Show more

Help me understand this report

Search citation statements

Order By: Relevance

Paper Sections

Select...

Citation Types

Supporting

Mentioning

Contrasting

Year Published

2008

2017

Publication Types

Select...

Article3

Relationship

Self Cite0

Independent3

Authors

Journals

Cited by 3 publications

References 18 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

The Therapeutic Misconception: A Threat to Valid Parental Consent for Pediatric Neuroimaging Research

Hadskis¹,

Kenny

Downie

et al. 2008

Accountability in Research

View full text Add to dashboard Cite

Neuroimaging research has brought major advances to child health and wellbeing. However, because of the vulnerabilities associated with neurological and developmental conditions, the parental need for hope, and the expectation of parents that new medical advances can benefit their child, pediatric neuroimaging research presents significant challenges to the general problem of consent in the context of research involving children. A particular challenge in this domain is created by the presence of therapeutic misconception on the part of parents and other key research stakeholders. This article revierws the concept of therapeutic misconception and its role in pediatric neuroimaging research. It argues that this misconception can compromise consent given by parents for the involvement of their children in research as healthy controls or as persons with neurological and developmental conditions. The article further contends that therapeutic misconception can undermine the research ethics review process for proposed and ongoing neuroimaging studies. Against this backdrop, the article concludes with recommendations for mitigating the effects of therapeutic misconception in pediatric neuroimaging research.

show abstract

The Therapeutic Misconception: A Threat to Valid Parental Consent for Pediatric Neuroimaging Research

Hadskis¹,

Kenny

Downie

et al. 2008

Accountability in Research

View full text Add to dashboard Cite

show abstract

Network of Ethical Relationships model for global North–South population health research

Morrison

Tomsons

Gómez³

et al. 2017

Global Public Health

View full text Add to dashboard Cite

Although a substantial body of literature exists that details how to address ethical issues and provide oversight for traditional research study designs, there currently is very little guidance available to researchers on how to deal with the unique and novel challenges that arise when conducting research that goes outside of these well-defined boundaries. One such example is North-South (N-S) team-based global population health (GPH) research. This paper presents a Network of Ethical Relationships (NER) model which can allow GPH researchers better understand and resolve ethical issues that arise in N-S collaborative research efforts. The NER model elucidates some of the core relationships involved in GPH research and sheds light on the complex milieu of moral, institutional, societal and legal processes in which it is embedded. The utility of the NER model is examined by reviewing 14 GPH research teams, looking at two relationships in more detail - Researcher-Ethics Board, and Researcher-Funder relationships. The paper argues that improved dialogue and flexibility in the application of formal ethical rules and procedures can lead to research being conducted in a more ethical manner since it better accounts for the multitude of voices and perspectives influencing researchers' choices and actions.

show abstract

A Survey of the Personalized Medicine Landscape

et al. 2008

View full text Add to dashboard Cite

scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.

Contact Info

hi@scite.ai

10624 S. Eastern Ave., Ste. A-614

Henderson, NV 89052, USA

Blog Terms and Conditions API Terms Privacy Policy Contact Cookie Preferences Do Not Sell or Share My Personal Information

Made with 💙 for researchers

Part of the Research Solutions Family.

Giving Voice to Research Participants: Should IRBs Hear From Research Participant Representatives?

Cited by 3 publications

References 18 publications

The Therapeutic Misconception: A Threat to Valid Parental Consent for Pediatric Neuroimaging Research

The Therapeutic Misconception: A Threat to Valid Parental Consent for Pediatric Neuroimaging Research

Network of Ethical Relationships model for global North–South population health research

A Survey of the Personalized Medicine Landscape

Contact Info

Product

Resources

About