Big data genomics- Genomics is emerging as a key source of data in healthcare.
- The benefits could be enormous – but we need to have a conversation about the risks and rewards, with society at its heart.
- It’s up to the experts to begin this dialogue, and they should start right away.
In an age when most of us have personal data in the digital ether, consent, privacy and protection still remain grey areas. Many of us give away or share our data, often without realising to what extent we are doing so. Even if it is explicit in the terms and conditions, how many of us can claim to read these fully? So can we really be sure our data is being handled carefully?
Whilst regulations exist to protect us (for example the General Data Protection Regulation (GDPR) in Europe, or the Protection of Personal Information Act (POPI) in South Africa), there is still a disconnect between these codes of practice and the everyday person, with little evidence to suggest there was any public consultation in their development.
What does this mean in terms of our genomic data?
Genomics (the study of our genes, which are made up of DNA) is emerging as a key source of data within most disciplines of healthcare. If we donate blood, participate in genetic research or have an online genetic test, our genomic data will join the array of personal data that is already held both online and offline about us. This offers a rich source of insight about human health and is sometimes bought, sold and shared between researchers (both non-profit and for-profit) on a huge scale, in ways often unknown to the person who donated the data. Or course, everything that happens to our genomic data should only be done with our consent, but again – how many of us actually read the terms and conditions?
How do we develop regulations that protect data donors?
For regulation to be truly connected to those it serves to protect, it needs to reflect the views and concerns of the public as well as those from whom the DNA data is derived (that is, the ‘data donors’). For people to feel heard, we therefore need to start asking them the right questions and feed their answers back to policy-makers.