A Study of Patient Centered Approaches to Gene Editing

Overview

About this study

The purpose of this study is to elicit lay, lived experience, and experts’ ethical concerns, clinical aspirations and governance needs regarding prenatal gene editing technologies. 

Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.

Inclusion Criteria:

  • Greater than 18 years of age
  • Meet one of the following categories: resident of the United States, adult caregiver for a child with a genetic condition, adult living with a genetic condition, clinical geneticist, genetic counselor, scientist, investigator, physician working at, or are members of, professional organizations in the spaces of genetics and/or human reproduction.
  • Lived and/or scientific experiences with one (or more) of rare genetic conditions (study focus): Tay Sachs, Huntington’s, Thalassemia, Hereditary Breast and Ovarian Cancer, Alzheimer’s, Autism, Deafness, Sickle Cell, Spinal Muscular Atrophy, and Achondroplasia.
  • Willing and able to participate in study activities in English.

Exclusion Criteria:

  • Under 18 years of age
  • Unable or lack the capacity to provide consent
  • Individuals who are not clinicians or scientists working at, or are members of, professional organizations in the spaces of genetics and/or human reproduction.
  • Non-English speaker

Note: Other protocol defined Inclusion/Exclusion Criteria may apply.

Eligibility last updated 07/25/2024. Questions regarding updates should be directed to the study team contact.

 

Participating Mayo Clinic locations

Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.

Mayo Clinic Location Status Contact

Jacksonville, Fla.

Mayo Clinic principal investigator

Megan Allyse, Ph.D.

Closed for enrollment

Contact information:

Megan Allyse Ph.D.

(904) 953-0368

Allyse.Megan@mayo.edu

Rochester, Minn.

Mayo Clinic principal investigator

Megan Allyse, Ph.D.

Closed-enrolling by invitation

What is this? (?)
"Close"
Not open to everyone who meets the eligibility criteria, but only those invited to participate by the study team.

Contact information:

Assata Kokayi Ph.D.

Kokayi.Assata@mayo.edu

More information

Publications

Publications are currently not available