Dr Allegra Schermuly1, Professor Alan Petersen1
1Monash University, Australia
Biography:
Allegra is a health sociologist whose research focuses on the impact of digital technologies on effective communication and stakeholder engagement in healthcare, including how consumers use digital media to advocate for unmet healthcare needs and combat isolation and loneliness. Her other key research area is the social and economic aspects of antimicrobial resistance.
Abstract:
The potential of stem cell-based interventions (SCIs) has attracted considerable interest among researchers, clinicians and chronic illness communities. While SCIs show great promise, with some clinical trials in Australia and overseas underway, evidence on their efficacy and safety is lacking with few viable treatment options currently available. In this paper we discuss the socio-ethical challenges posed by use of SCIs for treating arthritis, a group of conditions including osteoarthritis, rheumatoid arthritis and ankylosing spondylitis. A common feature of arthritis is chronic pain, which is invisible but incapacitating, impacting everyday activities. Treatment options are limited, oriented to managing symptoms or surgery, leading some to consider SCIs in the absence of clear evidence of efficacy. Drawing on interviews with people who live with arthritis and stakeholders in the field of stem cell treatments, and ideas from sociological research on self-management of chronic pain, we explore the socio-ethical quandaries posed by SCIs for treating arthritis. Specifically, we ask: is it appropriate for SCIs to be offered to those living with arthritis, even if they report improvements after use, when considerable uncertainty surrounds their benefits and safety? If patient reported benefits can be attributed to placebo-effects, does this matter? While, as our findings show, individuals are generally curious about what these interventions might offer, science-based evidence is contested, with individuals having to rely on their own impressions gained from interactions with clinicians, the views of other patients or media sources. We consider the ethical implications for those living with arthritis and clinicians given the uncertainties and contestations surrounding efficacy, benefit and risk of SCIs.