Oral Presentation Australasian Association of Bioethics & Health Law and New Zealand Bioethics Conference

The direct-to-consumer market for stem cell-based interventions in Australia: Exploring the experiences of patients left in a regulatory vacuum (939)

Tamra Lysaght 1 , Catherine Waldby 2 , Tereza Hendl 3 , Megan Munsie 4 , Wendy Lipworth 5 , Ian Kerridge 5 , Cameron Stewart 5
  1. Centre for Biomedical Ethics, National University of Singapore, Singapore
  2. Australian National University, Canberra
  3. Ludwig-Maximilians-Universität München, Munich
  4. University of Melbourne, Melbourne
  5. University of Sydney, Sydney

The growing prevalence of businesses selling autologous stem cell-based interventions (SCBI) to patients in Australia and other major healthcare markets have raised serious ethical and regulatory concerns. Key among these are concerns about how weaknesses in regulation have enabled the emergence of an industry that engages in aggressive marketing to patients in a manner that both exaggerates benefits and underplays risks. Yet little is known about how patients experience this marketing and their subsequent interactions with practitioners—particularly in the domestic context.

 This paper addresses this gap and reports results from an exploratory study of Australian patients and their carers who have accessed or have considered accessing an autologous SCBI from businesses operating in Australia. Findings are drawn from two workshops conducted in 2016 with patients, carers and family members (22 participants) and 15 semi-structured interviews (conducted in 2017). Results indicate that patients’ consideration of, and decision to undergo an autologous SCBI was shaped by five factors: illness experience, disillusion with current medical practice, unrealistic expectations, lack of reliable information from providers, and trust in the healthcare system and medical professionals. In light of these results, and recent changes to autologous cell product regulation in Australia, the paper concludes with suggestions for enhanced consumer awareness and the ongoing review of policy and regulation in this area.