We need to talk about big data and genomics. Here’s why – and how

This article, which Anna co-authored, results from a collaboration of The European Sting with the World Economic Forum
27th July 2020

Excerpt from article:

  • 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.

Citation:

Middleton A, Machiori M, Mabuka-Maroa J 2020. We need to talk about big data and genomics. Here’s why – and how. The European Sting [Online]. 27th July. Available at: https://europeansting.com/2020/07/27/we-need-to-talk-about-big-data-and-... [Accessed: 28 July 2020]