Stem Cell Scientists and The Public: Personal Reflections
August 14, 2018
A recent public forum in Melbourne, Australia, “Stem Cell Research – Now and in the Future,” allowed scientists and experts to share with the public the potential of this rapidly advancing research. There are many ways in which scientists, including our members, are using science outside of the laboratory for the public interest. In this blog post, three Australian stem cell scientists who attended the session describe their personal reflections on public engagement.
Recognizing the Public’s Contributions to Science
By Freya Bruveris, PhD, Murdoch Children’s Research Institute
At the public forum, I had the opportunity to talk with an amazing woman I’ll call Sarah. Meeting Sarah reminded me of the significant contribution the public can make in supporting scientific discovery in general, and with my own research specifically. For years, Sarah donated her eggs for in vitro fertilization (IVF). She knew that her fertilized eggs may have both helped couples with infertility and may also have been donated to science with the potential to help thousands more.
Cell and tissue donation is critical for the advancement of science and my research. Because of donated embryos, scientists were able to derive the first human embryonic stem (hES) cells in the laboratory in 1998, which today allow scientists to study many aspects of human biology and disease. Every day in the laboratory I am working to derive blood cells from hES cells in the hopes of treating individuals with blood disorders. The origin of the hES cells that I use for all of my experiments is intrinsically linked to donated embryos. This conversation with Sarah was very special as donations like hers have made my research possible. Without the public, neither my stem cell research nor that of thousands of scientists worldwide would be possible. With this in mind, I am indebted to repaying these extraordinary gifts every day in the laboratory through my work.
Outreach to Bring About Change
By Jennifer Hollands, PhD, The Florey Institute of Neuroscience and Mental Health
I often get asked by my friends and family ‘when are you going to cure my ailments with stem cells?’ Given that the public is bombarded by advertisements from private stem cell clinics claiming that stem cells can easily and effectively cure most any disease, it’s a fair question. Many available treatments, however, have not been rigorously tested or shown to be safe or effective. As a scientist I feel it is my responsibility to ensure that consumers are protected by evidence-based policies. Towards this end, I recently spoke to the public and lobbied the government for greater consumer protection.
Until recently in Australia, medical doctors could isolate a patient’s own cells, ‘minimally manipulate’ them, and re-administer them to the same patient without regulatory oversight. The majority of these stem cell therapies lacked scientific support, have not been rigorously tested in clinical trials, or proven to work as advertised. In fact, they can cause serious harm to patients. Scientific organizations including Stem Cells Australia and the ISSCR raised these issues before the Australian regulatory body, urging them to hold an open public hearing on the regulation of these stem cell therapies. At the hearing I joined other stem cell scientists in raising awareness of the risks of unproven stem cell interventions. In response, new regulations will go into effect this year that scrutinize stem cell clinics, protect consumers, and will hopefully reduce the number of predatory stem cell clinics. Having contributed to the introduction of tougher regulations, I’ve seen first-hand how critical it is for scientists like me to use their expertise and engage on behalf of the public.
Helping Loved Ones (and the Public) Learn about Science
By Ana Rita Leitoguinho, PhD Candidate, Murdoch Children’s Research Institute
As the only scientist in my family, it is up to me to translate scientific jargon into everyday language. As soon as I mention “stem cells” I see their eyes light up and I know they are impressed by the research I do, thinking of me as some sort of wizard. After all, scientists do wear distinctive long coats and talk in a peculiar language. It is vital for scientists to break down this language barrier.
By understanding the differences between healthy and damaged tissues, scientists can work to develop therapies to repair them. This process of translating research to an effective treatment is a long and laborious one. As a concerned daughter, I explain this process to my mum so she understands that while progress is slow, it is advancing. She needs to be able to distinguish science from non-science when she sees news on tv or social media, and to understand that stem cells can’t yet be used to cure her breast cancer. Because she understands this she can retain hope without falling prey to spurious therapies.
It is important for scientists to engage the public to create awareness, capture their imagination, ensure they are informed, and gain their support to fund research. Correspondingly, the public needs scientists to study diseases, develop treatments, and explain the progress. As in every relationship, communication is key. Scientists need to be able to explain their science because, at the end of the day, we are not wizards, we are just people, and we cannot do this work alone.