Public health surveillance is not ethically neutral and yet, ethics guidance and training for surveillance programmes is sparse. Development of ethics guidance should be based on comprehensive and transparently derived overviews of ethical issues and arguments. However, existing overviews on surveillance ethics are limited in scope and in how transparently they derived their results. Our objective was accordingly to provide an overview of ethical issues in public health surveillance; in addition, to list the arguments put forward with regards to arguably the most contested issue in surveillance, that is whether to obtain informed consent. Ethical issues were defined based on principlism. We assumed an ethical issue to arise in surveillance when a relevant normative principle is not adequately considered or two principles come into conflict. We searched Pubmed and Google Books for relevant publications. We analysed and synthesized the data using qualitative content analysis. Our search strategy retrieved 525 references of which 83 were included in the analysis. We identified 86 distinct ethical issues arising in the different phases of the surveillance life-cycle. We further identified 20 distinct conditions that make it more or less justifiable to forego informed consent procedures. This is the first systematic qualitative review of ethical issues in public health surveillance resulting in a comprehensive ethics matrix that can inform guidelines, reports, strategy papers, and educational material and raise awareness among practitioners.

Antimicrobial resistance (AMR) – the progressive process by which microbes, such as bacteria, through evolutionary, environmental and social factors develop the ability to become resistant to drugs that were once effective at treating them – is a threat from which no one can escape. It is one of the largest threats to clinical and global health in the twenty-first century – inflicting monumental health, economic and social consequences. All persons locally and globally, and even all future persons yet to come into existence, all suffer the shared, interdependent vulnerability to this threat that will have a substantial impact on all aspects of our lives. For example, while reliable data are hard to find, the European Centre for Disease Prevention and Control (ECDC) has conservatively estimated that, in Europe alone, AMR causes additional annual cost to health care systems of at least €1.5 billion, and is responsible for around 25,000 deaths per year. Furthermore, AMR significantly increases the cost of treating bacterial infections with an increase in length of hospital stays and average number of re-consultations, as well as the resultant lost productivity from increased morbidity. With a combined cost of up to $100 trillion to the global economy – pushing a further 28 million people into extreme poverty – this is one of the most pressing challenges facing the world. Most troublingly, if we do not succeed in diminishing the progression of AMR, there is the very real potential for it to threaten common procedures and treatments of modern medicine, including the safety and efficacy of surgical procedures and immunosuppressing chemotherapy. Some experts are warning that we may soon be ushering in a post-antibiotic area.

Emerging genomic technologies promise more efficient infectious disease control. Whole genome sequencing (WGS) is increasingly being used in tuberculosis (TB) diagnosis, surveillance, and epidemiology. However, while the use of WGS by public health agencies may raise ethical, legal, and socio-political concerns, these challenges are poorly understood. Between November 2017 and April 2018, we conducted semi-structured interviews with 22 key stakeholders across the fields of governance and policy, public health, and laboratory sciences representing the major jurisdictions currently using WGS in national TB programs. Thematic analysis of the interviews was conducted using NVivo 11. Respondents identified several ethical and practical challenges associated with WGS in TB care and surveillance, all related to issues of trust, including: 1) the power of public health; 2) data sharing and profits derived from surveillance efforts; and 3) concerns regarding who has access to, and can benefit from, the technology. Additional challenges included: the potential utility that WGS adds to a public health program, the risks associated with linking necessary epidemiological metadata to the genomic data, and challenges associated with jurisdictional capacity to implement the technology. Successful implementation of WGS is dependent on fostering relationships of trust between those working with genomics technology and those directly impacted by it, including clinicians. Building trust (a) between the public and the public health agencies and (b) within public health agencies themselves is critical due to the inherent complexity of WGS and its implementation for communicable disease control purposes.