Although lay participation has long been a feature of scientific research, the past decades have seen an explosion in the number of citizen science projects. Simultaneously, the number of low-cost network connected devices collectively known as Internet of Things devices has proliferated. The increased use of Internet of Things devices in citizen science exists has coincided with a reconsideration of the right to science under international law. Specifically, the Universal Declaration of Human Rights and the International Covenant on Economic Social and Cultural Rights both recognise a right to benefit and participate in the scientific process. Whilst it is unclear whether this right protects participation by citizen scientists, it provides a useful framework to help chart the ethical issues raised by citizen science. In this chapter, we first describe the origins and boundaries of the right to science, as well as its relevance to citizen science. We then use the findings of a scoping review to examine three main ethical and legal issues for using Internet of Things devices in citizen science.

This chapter engages with ‘legacy’ in two respects. It argues that Article 15 of the International Covenant on Economic, Social and Cultural Rights (ICESCR), the so-called right to science, has no legacy. It has achieved only marginal real-world impact and remains largely aspirational – all potential. By contrast, Graeme Laurie’s legacy, grounded in the public good and a strong sense of humanism, is significant and informative. Through multiple strands and projects, he has engaged deeply with the social contract between actors in the health setting, developing and refining the tools that could be used to help shape science and science governance in positive ways. Through an exploration of Article 15 ICESCR and select examples of Graeme’s scholarship, this chapter argues that the manifestation of Graeme’s legacy – the calling upon of his legacy – is what we need to generate some positive legacy for the sadly fallow ‘right to science’ articulated in Article 15 ICESCR. If we do this, it might one day have a legacy of its own.

In this chapter, we review the key elements of the larger international and transnational framework within which the national legal regimes regulating human germline genome modification exist. Part I is a quick primer to international law and international human rights for the benefit of those who are not familiar with them. Part II presents the relevant norms of international bioethics law, including three main declarations adopted by UNESCO touching on human genome modification. It discusses also the relevant governance activities of the World Health Organization, Organisation for Economic Co-operation and Development and civil society, nationally and transnationally. Part III discusses relevant international human standards, and in particular the so-called ‘right to science’ and the ‘rights of science’. Finally, Part IV discusses how these rights can contribute to the emerging international regulatory framework. This chapter argues that, by itself, international bioethics law and its instruments provide a narrow and inadequate description of the range of human rights that must be taken into account in the conversation on the regulation of germline engineering. These instruments must be integrated with the broader international human rights law corpus. When they are integrated, five key principles emerge as foundations of the emerging regulatory framework: freedom of research; benefit sharing; solidarity; respect for dignity; and the obligation to respect and to protect the rights and individual freedoms of others.

Canada’s approach to human germline modification is generally conservative, at times unclear, and largely prohibitive from both a research and clinical perspective. To date, no research using human germline modification has been undertaken in Canada. This chapter provides an overview of the Canadian legal and policy landscape surrounding human germline modification. It will begin by laying the groundwork for the subsequent assessment of specific legal provisions and policies governing the modification of the human germline from basic research to clinical applications. Finally, it will reflect on the challenges and future possibilities for human germline modification in Canada.

This chapter provides an overview of the ethical, legal, and policy framework of the Republic of Korea applicable to research on human germline genome modification and of the political and social fundaments behind it. It introduces the legal system and describes specific laws and policies related to the research on human embryos including the Constitution and the Bioethics and Safety Act. The legal framework applicable to the modification of the human genome is subsequently presented going from basic research to clinical application. The final part of our text critically reviews the implications of technological advancements in this field for legal reform, including the possibility of integrating solutions from international human rights instruments to develop a more progressive, yet responsible, national regulatory framework to human germline genome modification.