The Vanderbilt Kennedy Center (VKC) recently shared a new tool kit to encourage researchers to better include individuals with intellectual and developmental disabilities (IDD) in their research. “The Informed Consent Process for Adults With Intellectual and Developmental Disabilities” is designed to provide strategies to make the informed consent process go more smoothly for research participants with IDD.
This publication was edited, designed and produced by the Clinical Translational and Administrative Cores of the Vanderbilt Kennedy Center Intellectual and Developmental Disabilities Research Center (IDDRC), with research coordinator Kasey Fitzpatrick spearheading the project.
Individuals with IDD are often excluded from health-related research. Exclusion from research leads to reduced quality of health care and unknown treatment effectiveness. This contributes to overall health disparities in this population. One of the often-perceived barriers to inclusion of research participants with IDD is the informed consent process. The tool kit aims to provide strategies to make this an easier and more successful process for the researcher and their research participants with IDD.
“Our goal with this tool kit is to empower individuals with intellectual and developmental disabilities by giving them a stronger voice and greater autonomy in both research participation and medical decision-making,” Fitzpatrick said. “We also aim to encourage researchers to rethink how they involve participants in the informed consent process, ensuring it is inclusive, transparent, and truly respects the autonomy of all participants. By doing so, we hope to inspire more researchers to include more individuals with IDD in their studies and to motivate more people with IDD to participate.
“Exclusion from research creates gaps in health care knowledge and limits our understanding of treatment effectiveness, ultimately contributing to health disparities,” Fitzpatrick added.
“The Informed Consent Process for Adults with Intellectual and Developmental Disabilities” provides helpful information such as the steps of the informed consent process, assessing capacity to consent individuals with IDD, best practices communicating with participants who may be incapable of informed consent and more. There are examples of images that may be used to create your own visual supports to aid in communication with research participants with IDD.
The authors believe that by following the steps outlined in the tool kit researchers will be better prepared and can ensure that the process of obtaining consent from individuals with intellectual and developmental disabilities for research is conducted in an ethical, respectful and inclusive manner, promoting the rights and well-being of participants.
“My hope is that by providing this tool to researchers, they will be more comfortable including people with IDD in their research,” said VKC IDDRC Clinical Translational Core director Beth Malow, MD, MS. “That will make for increased inclusivity and ensure that our knowledge base about specific treatments is relevant to those with IDD.”
“The Informed Consent Process for Adults With Intellectual and Developmental Disabilities” is free to the public, as are all VKC printable resources, unless otherwise noted, and accessible via download. Click here to access “The Informed Consent Process” tool kit.
