- 5 years ago
22 July 2021
I have a confession to make. I’m a closet nerd and, just quietly, always have been. I spent my childhood watching Dr Who and with my nose in science fiction, my teen years unpacking theories of time travel, and I still find dystopian novels my ‘go to’ for relaxation and escape.
Most recently, I have been engrossed in a book by Walter Isaacson titled ‘The Codebreaker’, written predominantly about Nobel Prize-winning scientist Jennifer Doudna. Subtitled ‘Gene Editing and the Future of the Human Race’, it would rate as one of the best science fiction books I’ve read – that is, if it were fiction. The remarkable thing is, this story is real.
Doudna won the Nobel prize with science collaborator Emmanuelle Charpentier “for the development of a method for genome editing” now commonly known by its acronym – CRISPR. While the book provides a fascinating history of the study of genomics, perhaps most interesting is its exploration of the ethics behind the scientific discoveries made in the past decade.
This is real-life science fiction, complete with the potential to alter the human species, to make it better, healthier, stronger, smarter. It is a wonderful book and a compelling, thought-provoking and sometimes alarming read.
The age of cell and gene therapies has come upon modern society at an alarming pace. How we use these medical interventions may well now determine the future of our species. While a complicated topic, it is easiest to simplify the treatments as being either preventing, treating or enhancing human traits.
Prevention is where we can stop a disease or genetic characteristic from presenting, often by genetically engineering a human embryo so that it does not develop an otherwise inherited trait.
Treatments work on a disease or genetic condition. Novartis’ Luxturna (voretigene) treats a rare eye condition and restores sight while the company’s Kymriah is a CAR-T therapy used to treat blood cancers that would otherwise be a death sentence.
Enhancements are the most controversial, particularly ‘super enhancements’ that could engineer a baby to be born with, say, blonde hair and blue eyes, along with improved memory and above-average height.
It’s a lot to take in but all this is no longer the world of science fiction. Scientists have been in a race against each other to crack the mysteries of our DNA, and in doing so have unlocked the power to control the future of the species. Just last week, a committee formed to advise the World Health Organisation (WHO) released two reports recommending, among other things, international collaboration in the governance of gene-editing applications.
A new report commissioned by Novartis and authored by Evohealth titled, ‘Cell & Gene Therapies: Rising to the challenge‘ calls on Australia to determine what part it will play in this New World Order, and how it will manage access to these therapies for Australians.
It recommends the establishment of an Office for Rare Diseases within the Federal Government’s Department of Health and an expert advisory group to advise the TGA, PBAC and MSAC regarding these new-age medical interventions.
It also recommends enhanced horizon scanning to see what is coming next, a national approach to cell and gene therapies and a cross-functional working group that would enable industry, patients and academics to have input into health technology assessments.
As the world races to put guidelines around the use of these technologies which show such enormous promise but also pose an enormous threat, there are many complex issues on which Australia – and Australians – must decide, both from a regulatory and an ethical perspective.
Australian Genomics Managing Director Tiffany Boughtwood says whatever position Australia’s leaders take, it will need to “pass the pub test” and the community must be in agreement. This is rightly so.
Australia risks falling behind in this debate and now needs to get up to speed – fast. It is almost a year since the TGA approved Luxturna and two years since Kymriah became available, but the global pace of change is now moving so rapidly we can’t afford to be left out of the conversation. Pretending nothing has changed and treating these therapies like every drug that came before should not be an option.
The future is here. It is no longer science fiction; no longer the realm of nerds. It’s 203 years since Mary Shelley’s ‘Frankenstein’ was published but only three years since the first genetically engineered twins were born in China in a real-world experiment that showed what is now possible.
Humanity has been whisked along in a ‘Time Machine’ that has thrust us all into a ‘Brave New World’. We must now adequately prepare for the scientific, ethical, social and economic challenges that come with it.
©MedNews