The pressure to collect more health data and use that data more effectively is mounting as healthcare systems face greater challenges. However, the risks of increasing health data collection and making our health data work harder are myriad. Given that ‘good outcomes’ in relation to health data usage will be context specific and temporally contingent, the emphasis here is on fit-for-purpose instruments and good practice, acknowledging that health data usage is mediated not only through law, but also through governance structures around data resources themselves. This chapter therefore reviews the Canadian health data ecosystem, examining its federal and provincial legislative elements (with an emphasis on Nova Scotia). It then critiques that ecosystem, bearing in mind the needs of learning healthcare systems. In doing so, it highlights four ecosystem shortcomings, which are grounded in no small part on the perceived competition between private and public interests, and the poor alignment between contemporary data uses and traditional protections associated with autonomy (consent) and privacy (anonymisation). Finally, it offers some key considerations for ecosystem design, addressing specifically social license to operate and the value foundation of both legislation and repository governance instruments.

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.

This chapter considers how technological innovations represent disturbances with which regulatory frameworks must cope, focusing on innovations that can be characterised as ‘enhancing’. Human enhancement can no longer be dismissed as something with which serious regulatory frameworks need not engage. Enhancing pursuits increasingly occupy the very centre of human experience and ‘being’; one can observe widespread student use of cognitively enhancing stimulants, the increasing prevalence of implanted technologies, and great swathes of people absently navigating the physical while engrossed in the digital. The medical devices framework, one might think, should offer a good example of a regime that engages directly and usefully with the concepts implicated by enhancement and the socio-technical changes wrought by enhancing technologies. As such, this chapter focuses on the recently reformed medical devices framework. After identifying some enhancements that are available and highlighting what they mean for the person, the chapter introduces two concepts that are deeply implicated by enhancing technologies: ‘identity’ and ‘integrity’. If regulation fails to engage with them, it will remain blind to matters that are profoundly important to those people who are using or relying on these technologies.