Australian culture and pride were very much on display at ISCT 2019, the annual meeting of clinicians, regulators, researchers, technologists and industry who claim membership in the International Society for Cell and Gene Therapy (ISCT). While it was my first time attending an ISCT meeting, CCRM has had a presence there for several years now.
Like many scientific conferences, ISCT began with a pre-conference day and the official opening event began in the evening. At that opening welcome, we learned from ISCT President John Rasko that Therapeutic Innovation Australia is investing $8.8 million in five leading cell and gene therapy development and manufacturing facilities in Australia. (You can read the news release here.)
In other ISCT news, John Barrett received the 2019 Career Achievement Award for his contributions to ISCT, particularly his tenure as the Senior Editor of Cytotherapy journal and his commitment to training.
We also learned, well, some of us did, about Australian rhyming slang. It requires the use of two words that together rhyme with a single word. It is often based on popular culture and can be vulgar. Dr. Rasko amused the crowd by calling out incoming ISCT president Bruce Levine and his “nice bag of fruit” (i.e. his suit). He also came up with some ISCT-specific slang and accompanying photos (one example included here. Sorry about my sloppy photography!), as follows:
- Peach nectar = vector
- Champagne Charlie = CAR T
- Tennis semi-final = mesenchymal
- Co-chairs’ serenity = cell and gene therapy
Not clear yet? Check out this G-rated dictionary of slang that is suitable for the whole family.
In that same opening welcome, we were also treated to an Indigenous dance performance by the Yarra Yarra Dancers. The video below captures the dance “Creation.”
The meeting was full of plenary and concurrent sessions on a variety of themes and topics. You can read the program here. You can also get daily highlights of the conference, and see some photos, by reading ISCT’s newsletter, Telegraft.
Ethics
This year, the organizers added an ethics presentation to the annual general business meeting. After the obligatory financial and new appointment updates were made, and organizers and volunteers were thanked, Megan Munsie and Douglas Sipp gave talks.
Dr. Munsie’s presentation focused on the need to set standards in cell therapy, and by this she means in addition to regulating products. She is an advocate for protecting patients against stem cell tourism and encourages regulation that includes practice standards, codes of ethics, peer review, responsible stem cell innovation, laws and product regulation.
Protecting patients also involves educating them so they can make informed choices and decisions. Resources such as “5 things you should know about stem cells” and “The Australian Stem Cell Handbook” are designed for patients and their families. Equally important is the need to educate clinicians who are sometimes unprepared to counsel their patients on this issue. In response, the Australian Government has produced a guide for medical practitioners and workshops for medical students have taken place.
Doug Sipp presentation slide at ISCT 2019
Doug Sipp’s talk was about the health economics of pricing these new treatments and the ethical questions that come into play when you try to determine the value of a statistical life. Interestingly, but perhaps not surprisingly, this number changes depending on the jurisdiction. Sipp shared a slide showing the discrepancies between different U.S. federal departments and the Government of Australia.
He also talked about payers as the regulators of last resort and gave the example of approved products, such as Prochymal, that obtained conditional approval, but were not reimbursed – the exception being Temcell (Prochymal) that achieved full approval in Japan and reimbursement of $120,000.
Another ethics talk was part of the ISCT Presidential Task Force Session and looked at ethical issues in cell and gene therapy from basic research to clinical translation. It was organized and moderated by Dr. Munsie and included Sarah Chan, Wendy Lipworth, Bruce Levine and John Rasko.
Dr. Chan gave the ethics talk on scientific freedom and scientific responsibility in the pre-clinical setting and offered He Jiankui as her example under a slide heading “irresponsible science?”
She posed many interesting ethical questions, including “to what extent should scientists at the basic/pre-clinical stage be responsible for consequences of (clinical) applications?” There is causal responsibility (consequences of action or of failure to act), moral responsibility (blameworthiness and agency), and different senses of responsibility: acting responsibly; being held responsible for actions or outcomes; and, having (or taking) responsibility for doing the right thing. Finally, who has (or takes) positive, “upstream” responsibility? And, should scientists be obligated to “signpost” to warn others of the potential harm their research can do? Feel free to leave a comment below answering any or all of these questions, if you’d like.
Dr. Lipworth covered conflict of interest in clinical innovation and what the implications of this is for governance. She posited that clinical innovation has its place, for example surgical procedures and off-label prescribing, and these are allowed by regulators and encouraged by patients who aren’t always prepared to wait for research to go through the formal regulatory process. Informed consumers want access and say laws hold doctors back from innovating. On the other hand, there’s an assumption that doctors always have their patients’ interests at heart and have no other competing or conflicting interests. Stem cell tourism could suggest otherwise.
Dr. Lipworth made other points about governance and Right to Try and concluded that innovation has risks and benefits and needs governance; pushback against governance might be morally justified, but only when the patient’s interests are primary; and sometimes we need to push back against the pushback when patients aren’t being protected!
Dr. Levine focused on ethical issues in clinical trials and raised examples and scenarios that many clinicians experience in their efforts to help and counsel patients. Emily Whitehead was a focus of his talk.
The Ethics panel speakers at ISCT 2019.
Dr. Rasko explored the commercialization part of the pipeline, with questions about accelerated approval of therapies and Right to Try, and he stressed the importance of providing clinical evidence of efficacy before reimbursement takes place.
There was a great deal more happening at ISCT 2019 then I have room to cover here. If you’re on Twitter, visit #isct2019 for photos and highlights.
Stacey Johnson
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