Ethical decision-making frameworks assist in identifying the issues at stake in a particular setting and thinking through, in a methodical manner, the ethical issues that require consideration as well as the values that need to be considered and promoted. Decisions made about the use, sharing, and re-use of big data are complex and laden with values. This paper sets out an Ethics Framework for Big Data in Health and Research developed by a working group convened by the Science, Health and (...) Policy-relevant Ethics in Singapore Initiative. It presents the aim and rationale for this framework supported by the underlying ethical concerns that relate to all health and research contexts. It also describes a set of substantive and procedural values that can be weighed up in addressing these concerns, and a step-by-step process for identifying, considering, and resolving the ethical issues arising from big data uses in health and research. This Framework is subsequently applied in the papers published in this Special Issue. These papers each address one of six domains where big data is currently employed: openness in big data and data repositories, precision medicine and big data, real-world data to generate evidence about healthcare interventions, AI-assisted decision-making in healthcare, public-private partnerships in healthcare and research, and cross-sectoral big data. (shrink)

In this paper, we discuss the ethical concerns that may arise from the synthesis of human DNA. To date, only small stretches of DNA have been constructed, but the prospect of generating human genomes is becoming feasible. At the same time, the significance of genes for identity, health and reproduction is coming under increased scrutiny. We examine the implications of DNA synthesis and its impact on debates over the relationship with our DNA and the ownership of our genes, its potential (...) to disrupt common understandings of reproduction and privacy, and the way in which synthetic DNA challenges traditional associations between genes and identity. We explore the degree to which synthetic DNA may further undermine overgeneticised accounts of identity, health, reproduction, parenthood and privacy that are prevalent in the public domain and in some areas of policy-making. While avoiding making normative claims of our own, we conclude that there is a need for reflection on the ethical implications of these developing technologies before they are on us. (shrink)

It is plausible that in the future synthetic DNA (synDNA) technology could enable the creation of non-viable embryos for research, potentially bypassing ethical objections to embryo experimentation. This article explores how the technology might work, the ethical concerns it might mitigate, and the challenges that remain.