Donate

Patient Supported Approaches to Gene Editing (PaSAGE) Study

AANE maintains this listing of current research for the community’s information and possible participation. These research studies are external and are not ran by, nor affiliated with, AANE. To return to the main research study page that includes the full listing of research studies, study guidelines, and a link to submit a research study, click this link.

Date Posted

Research Study Description

We are conducting an NIH-funded study to elicit the views, ethical concerns, and clinical aspirations of key stakeholder groups on prenatal gene editing technologies.

Though prenatal gene editing is not currently being done in humans, it is possible that it will be available in the future, at least in a research setting. We, as a team of bioethics and social science researchers, strongly feel that the voices of individuals and groups impacted by emerging technologies should be heard. Because of this, we are committed to partnering with self-advocates and families of people with genetic conditions. One of the stakeholder groups we are interested in speaking to are family members and caregivers of individuals with Autism Spectrum Disorder (ASD).

Individuals who reach out are not obligated to participate; we would further explain the study, answer any questions they may have, and only move forward with study enrollment should they so choose. Participation involves an interview via Zoom or phone call, approximately one hour in length. Participation is completely voluntary, and participants will be compensated for their time.

This study is being conducted by Megan Allyse, PhD (Mayo Clinic) and Rosario Isasi (University of Miami), in collaboration with Case Western Reserve University, and the University of Pennsylvania. This research project has been approved by an Institutional Review Board (IRB), a group dedicated to protecting the rights, welfare, and privacy of people who take part in research studies.

I want to emphasize that our study is not advocating for or against the use of prenatal gene editing technologies. We are solely interested in learning the views of this community. Additionally, this is a qualitative research study, and we are not offering medical intervention. Engaging in medical discovery provides an opportunity to have an impact on the future of healthcare, and we appreciate your consideration in partnering with our team. For more information about our study and team, visit the PaSAGE Website (https://www.pasage-study.org/the-study).

Thank you. We appreciate your time!

Name of Organization:
Mayo Clinic, University of Miami, Case Western Reserve University, University of Pennsylvania

For questions, please email::
[email protected]

Study Link: 
https://www.pasage-study.org/the-study