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The sharing of data and samples are increasingly promoted as crucial to the timely response to infectious disease outbreaks by bodies such as the World Health Organization. Data and sample sharing are often discussed as an ethical imperative that should occur in order to better understand diseases, and facilitate the development of timely innovations to respond to infectious diseases. However, data and sample sharing present a number of macro- and micro-level ethical considerations which need to be reconciled in practice. These include issues of consent, privacy, and the distribution of benefits. Furthermore, the urgent need to share and respond to infectious disease emergencies may also strain certain areas of best practice. Crucially, the perspectives of stakeholders involved in sharing data and samples in infectious disease contexts have not been well documented. This study aims to address the lack of emphasis on stakeholders’ views by foregrounding their perspectives and practical experiences of ethical issues and views on the role of ethics governance. To achieve these aims, I employed a qualitative methodology, including participant observation and semi-structured interviews to capture the experiences of 28 key stakeholders who were purposively sampled to represent a range of different roles and positions. The primary focus of this research was on gaining insights about sharing data and samples from low- and middle-income countries, given the disproportionate burden of infectious diseases in these settings. The findings, and subsequent analysis, illustrate that data and sample sharing in the infectious disease context take place within a complex moral world. The importance of sharing data, and the optimal use of samples, was underscored by interviewees in this study. However, the nature of the data, samples, disease and the modes of sharing were all reported to have particular ethical implications. A further finding is that sharing often takes place between a diverse set of individuals and organisations, who can be unfamiliar with one another and who at times have differing priorities, and make divergent arguments about how sharing ought to take place for it to be considered ethical. Outbreaks were noted to present particular challenges. Timeliness of data and sample sharing was considered ethically important in outbreak situations, but there were otherwise conflicting views on whether and how the urgent nature of the response ought to change practice. The pressures of an outbreak response also present practical limitations to meeting the usual requirements of good practice, such as obtaining informed consent. The findings show that aspects of practice that have ethical implications for data and sample sharing in the infectious disease context are insufficiently captured in current guidance documents.

When we consent to something (e.g. a medical procedure, sex, a tattoo), we permit people to act in ways that would otherwise be legally or morally impermissible. However, in order for consent to be valid, certain conditions must be met. In this thesis, I discuss the condition that consent needs to be voluntary, I focus specifically on consent to medical procedures, and I argue that such consent is voluntary unless it is motivated by an influence that cannot be interpersonally justified. I call my view Interpersonal Consenter-Consentee Justification (ICCJ). ICCJ introduces the concept of interpersonal justification, known from the debate on contractualism, to the debate on consent and most clearly differs from other views in the literature by (i) focusing on the reasons or motivation for which a person consents, instead of mere causal links or counterfactuals, (ii) allowing the moral legitimacy and not just the strength of an influence to have a bearing on the voluntariness of consent, and (iii) making the behaviour of the person receiving consent (the consentee) central to its approach.

This thesis defends an individual's moral right to be aided in dying by a physician (that is, voluntary active euthanasia, or VAE), but departs significantly from the view in its favor generally accepted in the bioethics literature. The prevailing view appeals to both respect for an individual's autonomy and promotion of an individual's well-being as necessary conditions for a right to VAE, so as to justify the right only for those suffering grave illnesses and/or disabilities. The author argues that such a view is logically untenable; one or another aspect must be given up. Since invoking the premise that certain individuals would be better off dead necessarily relies on controversial assumptions about both the value of life and the nature and value of death, about which reasonable people disagree, it is the justification from an individual's best interest which must be excluded in a liberal society. The author endorses a self-determination justification for the right to VAE, but rejects understanding this in terms of respecting personal autonomy, instead making the case for a right to VAE grounded in self-ownership. The author's main conclusion is that the right to VAE is a general right applying to all competent adults, not only those suffering grave illnesses or disabilities, or those whose choice for VAE is an exercise of autonomy. Moreover, by analyzing the basis of physician authority over prescription medicine and how this can be justified to a society of self-owners, she maintains that individuals have not only the right to choose VAE without state interference, but also the right to be provided VAE by doctors. Nevertheless, both rights are compatible with reasonable limitations to protect both the interests of VAE seekers and the rights of others.

Personal autonomy is often lauded as a key value in contemporary bioethics. In this thesis, I aim to provide a rationalist account of personal autonomy that avoids the philosophical flaws present in theories of autonomy that are often invoked in bioethics, and that can be usefully applied to contemporary bioethical issues. I claim that we can understand the concept of autonomy to incorporate two dimensions, which I term the 'reflective' and 'practical' dimensions of autonomy. I suggest that the reflective dimension pertains to the critical reflection that agents must carry out on their motivating desires, in order to be autonomous with respect to them. I begin by rejecting prominent desire-based and historical accounts of this dimension of autonomy, before going on to defend an account based upon a Parfitian analysis of rational desires. Following this analysis of the reflective dimension of autonomy, I argue that autonomy can also be understood to incorporate a practical dimension, pertaining to the agent's ability to act effectively in pursuit of their ends. I claim that recognising this dimension of autonomy more comprehensively reflects the way in which we use the concept of autonomy in bioethics, and makes salient the fact that agents carry out their rational deliberations in the light of their beliefs about what they are able to do. I go on to argue that this latter point means that my account of autonomy can offer a deeper explanation of why coercion undermines autonomy than other prominent accounts. Having considered the prudential value of autonomy in the light of this theoretical analysis, in the latter half of the thesis I apply my rationalist account of autonomy to a number of contemporary bioethical issues, including the use of human enhancement technologies, the nature of informed consent, and the doctor-patient relationship.

The collection, storage, export and use of human biological samples are important research practices in international collaborative research. However, the limitations of current ethical and regulatory frameworks to govern these research practices have resulted in inconsistencies in practice and a number of ethical concerns for researchers, research institutions and research ethics committees (RECs). The aim of this thesis was to contribute to an empirically-informed understanding of the ethical issues arising in the export, storage and future uses of human biological samples from sub-Saharan Africa (SSA). The thesis is based on an empirical bioethics project to examine stakeholders' perspectives of and responses to the ethical issues arising in these research practices. I employed a qualitative strategy of inquiry involving document review, observations, semi-structured interviews and focus group discussions with key stakeholders in Nairobi and Kilifi in Kenya and Navrongo and Accra in Ghana. The project suggests that the ethical issues arising from the use of human biological samples depends on the nature of interactions between key stakeholders in biomedical research. Despite the compelling reasons for sample export, storage and use, and the existence of structures governing these research practices, the stakeholders I interviewed expressed several practical ethical concerns. These relate to consent, cultural sensitivities around blood, local control of samples, power-relations, capacity building and trust-relationships. Drawing on these findings and existing literature, I argue that host research institutions bear the ultimate responsibility for the ethical conduct of research and should act as responsible stewards of research samples. I argue that it is important to refocus attention on important values in international research ethics such as trustworthiness to address the issues arising in practice. Recognising the limitations of current governance mechanisms and the uncertainties surrounding future uses of samples, I propose an entrustment framework to strengthen relationships between communities and host research institutions on one hand and between collaborating research institutions for research involving human biological samples in Africa. I also propose a set of 'points-to-consider' for research institutions, ethics committees and funding agencies.