Gene Editing Research With a Patient Centered Approach


About this study

This is an interview study to understand the views of people with the lived experience of 10 different genetic conditions on gene modification therapies, and specifically on prenatal gene editing. Prenatal gene editing is not happening now, but it is possible that prenatal gene editing will be available in the next few years, at least in a research setting, and we want to know your thoughts about the direction this technology is going. We to hope speak with many different stakeholders (patients and their families, clinicians, scientists) with diverse perspectives to understand values and priorities for prenatal gene editing, including whether and how to make this technology available.

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:

  • A person with one of the identified genetic conditions OR a parent or guardian of a child or young adult previously diagnosed with the condition or otherwise at risk of the condition OR a spouse or primary relative of an individual currently experiencing or who has died as a result of a disease of interest;
    • The diseases of interest are:
      • Tay Sachs;
      • Spinal Muscular Atrophy;
      • Huntington’s;
      • Thalassemia;
      • Sickle Cell;
      • BRCA1 and 2;
      • Alzheimer’s;
      • Autism Spectrum Disorder;
      • Hereditary Deafness or Hearing Loss.
  • ≥ 18 years of age.
  • English speaker.

Exclusion Criteria: 

  • Not affected or not affected by a disease of interest.
  • No parental, spousal, or familial relationship to a person with a disease of interest..
  • < 18 years of age.
  • Not an English speaker.

Eligibility last updated 7/19/22. 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

Rochester, Minn.

Mayo Clinic principal investigator

Karen Meagher, Ph.D.

Open for enrollment

Contact information:

Kirsten Riggan M.S., M.A.

(507) 284-2046

Jacksonville, Fla.

Mayo Clinic principal investigator

Megan Allyse, Ph.D.

Open for enrollment

Contact information:

Laura Pacheco-Spann M.S.

(904) 953-0408

More information


Publications are currently not available

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