Privacy, Data and the Individual : The ethics of data acquisition

The sharing of data by individuals and organizations for research, policy-making, and humanitarian purposes is increasingly recognized as a crucial mechanism for building a better society (Chretien et al 2016). However, issues such as a lack of clarity on data control and ownership; disagreement about how best to respect individual rights, consent, and privacy; limited technical understanding; and the lack of adequate frameworks for ethical governance pose serious challenges to ethical data exchange. Guidance on how to best meet these challenges is urgently needed to ensure respect of users’ individual rights while ethically harnessing the value of data to spur scientific research, public debate, and societal well-being.