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Public Health Engagement on Stem Cell Research and Practice in Australia

Public health engagement in stem cell research and practice in Australia plays a crucial role in fostering awareness and dialogue among patients, researchers, clinicians, healthcare providers, and policymakers. It ensures patients, healthcare providers, and policy-makers are informed on the promises and limitations of stem cell therapies (SCT), serving as a vital bridge between scientific innovation and its benefits in society. When done effectively, public health engagement facilitates the mutual exchange of information between all stakeholders, inviting relevant opinions, questions, and concerns. Furthermore, community consultation improves public trust and community outcomes through local knowledge and experience. This commentary explores the benefits and challenges of stem cell research globally and compares public engagement activities in two active stem cell research communities, Australia and Japan. Reflections and future considerations will conclude, focusing on the importance of community partnership in creating a two-way dialogue between the scientific community and broader society.

The challenges of unproven stem cell therapies

SCTs such as pancreatic islet transplantation, human induced pluripotent stem cell -derived T cell products, and haematopoietic stem cell transplantation offer life-changing benefits for sufferers of Type 1 Diabetes and haematologic malignancies (1). However, the expansion of the unproven SCT industry continues to threaten public health and industry reputation, where patients with unmet health needs seek unproven treatments and cures advertised by unscrupulous businesses (2). Beyond their lack of efficacy, unproven SCTs can pose a greater risk of complications, including infection, rejection, and tumorigenesis (3). Between 2009 and 2014, Davide Vannoni, convicted stem cell salesman and founder of Italy’s Stamina Foundation, sold unproven, unsafe stem cell injections for conditions like Parkinson’s disease, muscular dystrophy and spinal muscular atrophy (4). Additionally, media coverage of high-profile athletes receiving SCTs for recovery has created a public perception that SCTs will soon be available as novel therapies and cures, increasing the demand for unproven SCT clinics (5).

In 2019, Australia’s Therapeutic Goods Administration introduced regulations that included a ban on direct-to-consumer advertising (6). Despite Australia’s effective regulatory response, public engagement remains critical in educating patients on the harms of misinformation and improving their ability to give informed consent (2). For example, in 2016, researchers found that online marketing of unproven SCTs was skewed towards consumers from countries with stricter regulations, such as Australia, Germany and the United States (7). Meanwhile, ‘tokens of scientific legitimacy,’ including patent applications and articles in predatory journals, were tactfully used to market their treatments (7). Combined with the significant demand from carers and patients with conditions that are not well-treated today, the global unproven SCT market continues to thrive, estimated at USD 2.4 billion annually (8).

Engaging the public on stem cell research in Australia and Japan

Health information-seeking is common among patients living with chronic illnesses. Although web-based health information is easy to access and low-cost, patients face the challenge of distinguishing between accurate, evidence-based content and biased or misleading information. Severe health effects are a result, such as the 2016 death of Sheila Drysdale in Sydney following complications from a stem cell procedure intended to treat her dementia (9). The Australian government launched the Stem Cells Australia website in 2011 to address this issue, translating the latest stem cell research into clear, understandable information for the public (10). Furthermore, by partnering with local community groups and patient advocates, including Multiple Sclerosis Australia and Cerebral Palsy Alliance, Stem Cells Australia can identify opportunities to raise awareness about the risks of unproven SCTs (6,10). In addition to mass media reporting on the dangers of unproven SCTs (11–13), community partnerships in Australia are vital in delivering targeted interventions and empowering patients with reliable information to make informed decisions.

Japan is a world leader in stem cell research and regulation, which is similarly achieved through collaboration between regulators, scientists, healthcare providers, and the public. Like Australia, Japan’s role in ensuring the safe delivery of SCTs has predominantly focused on regulatory measures, mainly through the Act on the Safety of Regenerative Medicine (ASRM). Enacted in 2014, the ASRM covers research and treatment, including cosmetic enhancement procedures, and sets rigorous safety standards for cell culturing and processing (14). As a result, some private clinics were temporarily suspended and required to improve their safety protocols, with non-compliant clinics also publicly listed on the Ministry of Health, Labour, and Welfare (MHLW) website (14).

Japan's science policies, such as the 2001 Second Science and Technology Basic Plan, have encouraged science communication (15). For example, funding from the Japanese Ministry of Education, Sports, Science, and Technology has supported science cafes, surveys, questionnaires, lectures, and scheduled community consultations (16). Moreover, follow-up surveys of science cafe participants in Japan have reported positive changes, including increased knowledge and skills for illness self-management, such as seeking quality care (17). However, despite the aim of fostering informal dialogue, lecture-style cafes organised by scientific institutions were prominent. In such settings, a culture of respect for authoritative figures may create a barrier for laypersons to ask critical questions in public (18).

Reflections and Future Considerations

Australia and Japan are well-regarded leaders in stem cell regulation worldwide. Since the rapid growth in stem cell discoveries in the new millennium, both nations have encouraged public engagement in research in science policies. Furthermore, public engagement through science cafes offers an informal way to educate health-information seekers. Flexibility of the format ensures the design can be adapted to many contexts and to suit specific agendas. However, overall, there has been a strong emphasis on ‘top-down’ measures to address the safety of current and emerging SCTs through decisions by those in positions of power. Public health initiatives should go beyond regulation and explore ‘bottom-up’ approaches, as exemplified by Stem Cells Australia, which collaborates with grassroots, public-health-driven organisations. By partnering with community groups and patient advocates, access is unlocked to specific target groups and local knowledge, which can benefit vulnerable consumers or those with limited scientific/health literacy. In addition, other modalities of public consultation, such as participatory design involving health information-seekers in creating educational platforms, may also improve health information accessibility. 

References

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