Ms Libby Massey1
1Mjd Foundation, 2James Cook University
Several remote Aboriginal communities across north and central Australia experience high rates of Machado Joseph Disease (MJD/SCA3), an incurable, slowly progressing, fatal genetic neurodegenerative disease. Despite a predominantly adult-onset, MJD also affects children due to the phenomenon of genetic anticipation. Some families are interested in exploring various disease management strategies, potentially including reproductive decision-making, such as donor-assisted conception, termination of pregnancy, or preimplantation genetic screening.
A biomedical western worldview/framework focused on individual choice and decision-making dominates Australian approaches to the use of medically assisted reproduction to minimise disability. The fit with these families’ worldviews requires careful consideration and may involve the examination of standpoints from other cultural and sociological perspectives. My PhD research in progress examines how senior women in the affected families from Groote Eylandt are considering traditional practices, their existing knowledge and experiences, and potential practical obstacles to engaging with strategies such as Assisted Reproductive Technology (ART).
This presentation will outline emerging perspectives about family, marriage patterns, health literacy and the utility of the concept of disability for these families living with a newly encountered genetic disease in Aboriginal communities in northern and central Australia. Building knowledge about the potential acceptability of the processes will raise ethical, legal, strategic and public health issues related to the use or avoidance of technology and access to advice and support, which, although specific to this situation, will provide insights to guide the management of genetic disease in other culturally-diverse contexts.
Biography:
Libby Massey is a doctoral candidate at James Cook University. She holds a Master of Public Health from the University of Wollongong and a Bachelor of Laws from the Queensland Institute of Technology. She co-founded the MJD Foundation and began her career as an occupational therapist.