Research Study: Communication and testing experiences of adolescent girls and adult women in families with X-linked adrenoleukodystrophy

Purpose of Research: Genetic counselors are often involved in facilitating genetic testing for both a patient and their biological relatives. While testing in some circumstances is considered routine and consistent with the standard of care in the field, other circumstances involve more morally ambiguous circumstances with limited guidance and unclear standards within the genetic counseling profession. One such circumstance involves genetic testing for minors (children and adolescents). This study seeks to study the experience of girls and adolescents in families with X-ALD to better inform medical care and support needs for people and families with X-ALD in the future.

Eligibility: To be eligible for this study, you must be a girl or woman living in the United States between 14 and 25 years of age with:

A family history of X-ALD
A diagnosis of X-ALD (previously called being a carrier of X-ALD)
A chance of having X-ALD (previously called being a carrier of X-ALD)

The survey is here: https://umn.qualtrics.com/jfe/form/SV_1MtlWxvkNowEYpU

Principal Investigators: Ian MacFarlane, PhD; Rebecca Tryon, MS, MA, CGC; Perla Cortes, BS

Ian MacFarlane, PhD is a counseling psychologist who earned his Ph.D. from the University of Minnesota. His primary research interest is professional development, health outcomes, psychological measurement, and social justice advocacy. Dr. MacFarlane has extensive experience supervising graduate and undergraduate research, and has written a text on genetic counseling research methods.

Rebecca Tryon, MS, MA is a licensed, certified genetic counselor working at the M Health Fairview/UMN Pediatric Blood & Marrow Transplant clinic where she provides genetic counseling for families with genetic conditions, including X-ALD. Rebecca obtained her Masters of Science in genetic counseling and Masters of Arts in bioethics at the University of Minnesota, Twin Cities.

Perla Cortez, BS is a genetic counseling graduate student at the University of Minnesota (UMN) Genetic Counseling Masters Program. She received her BS in Biology from Augsburg University where she became a published researcher and has prior work experience with the UMN Molecular Diagnostics Laboratory.