Promote Sharing Individual Research Results

Join our movement to advance the ethical values that drive this bill of rights: 

Respect for Persons, Autonomy, and Transparency.

The stakeholder committee requests that you or your organization consider endorsing and implementing the rights below by responding to the survey below. You may also provide feedback. We believe that providing individual results will empower research participants to actively engage in research and to manage their own health and well-being. A positive research experience will build trust and inspire others to engage in research, thus benefiting the community of individuals impacted by Alzheimer's and related dementias and research in general.

Study Participant Bill of Rights to Receive Individual Research Results

1. I have the right to receive my individual results, collected in the course of my research participation if I so choose; I can also ask how to receive them. This may be done in person or by tele-health, and either alone or with a person of my choosing.
2. I have the right to learn information promptly as it becomes clinically significant during the study, and understand that other information can be shared at a time that will not impact study integrity.
3. I have the right to be fully informed before joining a research study, including receiving information on validated decision-making tools if they are available.
4. I have the right to know who can access my results, and to understand how the law does or does not protect me after receiving my results. In order to protect myself, I understand that it may be in my best interest to complete any legal and financial planning.
5. I have the right to be told what my individual results mean, in easy-to-understand terms and with sensitivity, compassion, and patience. This information should also be provided in writing, so that I may review it later.
6. I have the right to have my questions answered to the best of the researcher's knowledge and to be given the time I need to process the information I received.
7. I have the right to accept or decline being contacted after receiving my result, suggesting increased risk of disease (like dementia), and to be referred to additional resources for more information and support related to my health and wellbeing.
8. I have the right to decide what actions I take after receiving my test results, such as pursuing medical and/or psychological care, engaging in legal or financial planning, and informing my family and friends of my results.
9. I have the right to turn my results into action for my own well-being and the betterment of others, by exploring additional research studies that I may qualify for.
10. The above rights should apply regardless of my cognitive status.

Leadership Team

Jamie Tyrone, research participant and advocate: "As a 14-year research participant in a longitudinal biomarker study, it became medically necessary to compare a volumetric MRI that was done in a clinical setting to the ones that were done during the study. After a year, with the help of the independent review board, I was grateful and empowered to use those results to make future decisions."

Reverend Dr. Cynthia Huling Hummel, Research Participant and Advocate, Living with Alzheimer's Disease: "I have participated in the ADNI study for more than 15 years, and I ask you my colleagues & partners in research, to the extent that you are able, to shape research protocols at your institution, to adopt this Study Participant's Bill of Rights at your institution and to build the return personal results to research participants into your funding and study. Plan for it and do it. PERIOD. I realize that some research participants may not want to know their results, but many of us do. Thank you."

Brother John-Richard Pagan – advocate living with Lewy Body Dementia: "As an advocate for those living with dementia and their care partners, I often hear researchers and supporters of research state that there is a shortage in participants. I get this. I want to participate in research, but I want to know the details first. What are my rights? Will I be told of my test results or findings? As someone interested in the research, will papers that are published or presented at conferences be shared? I cannot make a decision to participate, until I know what I am getting into, so of course there is a shortage. Help me to know the facts."

*Disclaimer: The views and opinions expressed on this page are solely those of the stakeholder committee members and do not necessarily reflect the official policy or position of AGREEDementia.

For further questions, contact Sarah Walter, waltersa@usc.edu