The myth of ‘messing’ with biology
The 4th of our contributions from Gemma Milne, Science & Technology Writer; and Co-Founder of Science: Disrupt
On July 12, 2017, a young girl changed the future of cancer treatment. At a Food and Drug Administration meeting in Silver Spring Maryland, a group of external advisors convened to decide whether to approve the use of a controversial cancer therapy called CAR-T. The therapy consists of drawing cells from a patient’s blood, and then reprogramming them in the lab to create new, genetically coded cells that hunt the cancer down. The man arguing the case forward stood at the podium, going through the pros and cons of the treatment to the jury, maintaining that despite the risks that come with new genetic treatments, the therapy is worth pursuing if it’s to save someone’s life.
As he spoke, 12-year-old Emily Whitehead walked up to the podium, stood beside her father, and showed the jury what the healthy — surviving — first receiver of this experimental therapy five years earlier now looked like.
The jury voted unanimously to approve CAR-T.
Stories like that aside, the world of future health has a marketing problem. Phrases such as ‘designer babies’ and ‘engineering your cells’, along with loaded words like ‘artificial’ and ‘Frankenstein’ plague the world of biotech, prompting many to believe that some of the most radical advancements are simply ‘messing with biology’. It’s easy to be convinced that genetic editing, brain implants and fundamentally manipulating our cells is something to be left to the cyberpunks of the movies.
But we’ve been wrong about the potential of new biological methods before. Take Louise Brown — the first baby born by IVF, who turned 40 earlier this year. Before her birth, IVF was seen as a dangerous, ill-conceived idea. Doctors and scientists backing it were called out both by the academic community and the general public, as irresponsible. IVF was seen as meddling with the natural order of things — a distinctly un-natural procedure not meant for the human race. Forty years on though, six million babies have been born through IVF, and it’s now widely accepted as a way to bring children into the world.
All it took to completely change public opinion was a working case study: a real human story.
The discussions surrounding new technologies are of course important: we must, as a society, decide not only which technologies are worth spending our time and money on, but what is ethically right too. However, much is missing from many a debate on future biological advances. Arguments tend to centre around the ethical implications of ‘letting out’ a potentially dangerous idea into the world, paving the way for those with dastardly ideas to execute horrific plans (gasp, genetic engineering gone crazy!); and on the other, letting those with wealth, and a degree of bravery, to enhance their own bodies beyond what is actually needed to live, in a bid to be superhuman. In short, the argument is that by allowing these new methods to be practiced and introduced, you give someone an unfair advantage.
What’s missing in these debates — however — is the argument that by allowing the advancement of biological knowledge and practice, you give someone who naturally has an unfair disadvantage, a leg up back to the norm. IVF is a perfect example — it’s not about giving women extra pregnancy superpowers, but rather, giving woman who can’t otherwise become pregnant, the ability to conceive. The playing field is levelled, not imbalanced.
Turn that same thought towards genetic editing, towards brain implants, and towards the world of enhancing our bodies beyond what we’ve been born with (or what we might have lost through injury, illness or devastating accident), and suddenly you have an emotional human story about being able to do what you couldn’t do before.
The vast majority of people working on methods to improve health and wellbeing are doing it because it will make life better for the human race. They’re not doing for fame and fortune and they’re certainly not doing it for world domination. Somehow, that desire is lost in translation, and is blown up into a conspiratorial, hyped up version of the truth — with only one side being argued loudly. Think where we would be today if people had only listened to the detractors arguing against the introduction of organ transplantation, for example.
But is there a risk we go ‘too far’ in the quest to edit our biology? Of course. But in the process of debating what is too much, we are sometimes missing the crucial ‘what is needed’ conversation. We are denying ‘those in need’, over the worry of ‘those who might’.
We know the cost of bad reputation in the world of consumer brands all too well — the same is true for even the most exciting science. The first rule of marketing is ‘know your audience’; the second is ‘tell a human story’ — the world of biology has much to learn from the marketing industry. Emily Whitehead and her father knew that showing the emotional side of their argument — her healthy, healed self — was the motivation needed to approve the therapy. The potential that story of Louise Brown’s birth opened up for despairing would-be parents all over the planet was astounding.
If we’re to get the public on side with future advances in health treatment (and indeed the future of the human race), we must get better at avoiding the clickbait horror stories and instead better promote the true cost of saying no to progress. Reputation, words and public sentiment are powerful drivers in building the future — let’s hope we manage to drive in the direction best suited to advancing the lives of the many.