“Genomic medicine is such a fundamental aspect of human health because it is the most personal part of us.
From the outside we all look more or less the same; we are all human beings trying to be healthy, walking through life. However when it comes to medicines and personal healthcare decisions, most of us have to make a guess as to what our best options are. We base this almost entirely on what we discern from the outside, with a small amount of knowledge of what is on the inside. Yet our genomic makeup and what truly differentiates us as individuals is where we can find incredible benefit.
Data is a powerful thing. It’s funny that we are willing to divulge all kinds of private information to an airline in exchange for transporting us safely to our destination. But we hesitate to give private information to the healthcare industry, who could provide us with far more life-changing services from this information. It is worth questioning: Is fair for me to expect that a drug or treatment will be useful for me specifically, without sharing information about my genomic makeup?
We need to demystify the belief that sharing medical data is bad thing. By being more transparent about what is on the inside, we will enable the healthcare industry to develop better, safer drugs. We hold the keys to unlock the genomic information inside all of us, and in providing it to a responsible industry, we can play our part in developing more effective medicines and treatments that help us as individuals.
The other side to this coin is that genomic information is the most personal of all personal data. It is – fundamentally – what we are. Consequently, the healthcare industry must treat this information with the utmost respect. It must enter into a clear and honest dialogue with people to explain how data is to be used and the benefits it will ‘pay back’ in return for this highly privileged access.
For example, although genomics is going to expand, there still will be a need to conduct clinical trials in the future. But the thing with clinical trials is that if they are genomically enabled, it vastly alters the landscape for the betterment of all those involved. You need fewer patients on the trials, with fewer side effects and costs. And you gain more accurate results at a more efficient rate. We can stop that bad feeling of someone having to be a guinea pig with no benefit.
The more people understand the power and the immense benefit they provide by disclosing their genomic information, with respect to responsibly sharing data and being able to use the data in a very open and transparent way, the more we enable ourselves and the more we enable industry to advance medicines and improve lives for all.
I believe that we need to start opening up to the power of genomics. Genomics is not a silver bullet… not the solution to everything, but it will contribute importantly to understanding disease at a more granular, individual level. It’s all about creating a better solution to a problem that one cannot necessarily see from the outside - and I believe it will absolutely revolutionise healthcare.”
Joanne Hackett is a successful academic, entrepreneur, investor and Chief Commercial Officer at Genomics England. She has personally experienced the life changing potential of genomic medicine: As a child she was hospitalised repeatedly for epileptic seizures – once suffering 50 in one day. Only as an adult was her whole genome was sequenced and a coeliac diagnosis confirmed. As Commercial Officer at Genomics England she wants to ensure, through revolutionary partnerships, that millions more people will benefit from the transformative potential of genomic medicine, just as she did in the field’s infancy.