Discussions on the ethics and regulation of clinical research have a great deal to say about the responsibilities of investigators, sponsors, research institutions and institutional review boards, but very little about the responsibilities of research participants. In this article, we discuss the responsibilities of participants in clinical research. We argue that competent adult participants are responsible for complying with study requirements and fulfilling other obligations they undertake when they make an informed choice to enrol in a study. These responsibilities are (...) based on duties related to promise-keeping, avoiding harm to one's self or others, beneficence and reciprocity. Investigators and research staff should inform participants about their responsibilities during the consent process, and should stress the importance of fulfilling study requirements. They should address any impediments to compliance, and they may provide participants with financial incentives for meeting study requirements. In very rare cases, coercive measures may be justified to prevent immanent harm to others resulting from non-compliance with study requirements. (shrink)

The issue of detention as a tuberculosis control measure has resurfaced following the prolonged detention of a patient with an extensively drug-resistant strain of tuberculosis in a prison cell in Arizona, and the attempted detention in Italy and subsequent detention in Atlanta, Georgia of an American sufferer thought to have XDR-TB in May 2007. These cases have reignited the debate over the evidence that supports detention policy in the control of tuberculosis, and its associated legal and ethical ramifications. This paper (...) considers whether involuntary detention is justified where voluntary measures have failed or where a patient poses a danger, albeit uncertain, to the public, and discusses the need for strengthening evidencebased assessments of public health risk. (shrink)

ABSTRACT Accurate self‐administration of antiretroviral medication therapy for HIV/aids is a significant clinical and ethical concern because of its implications for individual morbidity and mortality, the health of the public, and escalating healthcare costs. However, the traditional construction of patient medication adherence is oversimplified, myopic, and ethically problematic. Adherence relies on existing social power structures and western normative assumptions about the proper roles of patients and providers, and principally focuses on patient variables, obscuring the powerful socioeconomic and institutional influences on (...) behaviour. Some professionals advocate for alternate approaches to adherence, but many of the available alternatives remain conceptually underdeveloped. Using HIV/aids as an exemplar, this paper presents medication practice as a theoretical reconstruction and explicates its conceptual and ethical evolution. We first propose that one of these alternatives, medication practice, broadens the understanding of individuals’ medication‐taking behaviour, speaks to the inherent power inequities in the patient‐provider interaction, and addresses the ethical shortcomings in the traditional construal. We then integrate medication practice with feminist thought, further validating individuals’ situated knowledge, choices, and multiple roles; more fully recognizing the individual as a multidimensional, autonomous human being; and reducing notions of obedience and deference to authority. Blame is thus extricated from the healthcare relationship, reshaping the traditionally adversarial components of the interaction, and eliminating the view of adherence as a patient problem in need of patient‐centred interventions. (shrink)

ABSTRACT Accurate self‐administration of antiretroviral medication therapy for HIV/aids is a significant clinical and ethical concern because of its implications for individual morbidity and mortality, the health of the public, and escalating healthcare costs. However, the traditional construction of patient medication adherence is oversimplified, myopic, and ethically problematic. Adherence relies on existing social power structures and western normative assumptions about the proper roles of patients and providers, and principally focuses on patient variables, obscuring the powerful socioeconomic and institutional influences on (...) behaviour. Some professionals advocate for alternate approaches to adherence, but many of the available alternatives remain conceptually underdeveloped. Using HIV/aids as an exemplar, this paper presents medication practice as a theoretical reconstruction and explicates its conceptual and ethical evolution. We first propose that one of these alternatives, medication practice, broadens the understanding of individuals’ medication‐taking behaviour, speaks to the inherent power inequities in the patient‐provider interaction, and addresses the ethical shortcomings in the traditional construal. We then integrate medication practice with feminist thought, further validating individuals’ situated knowledge, choices, and multiple roles; more fully recognizing the individual as a multidimensional, autonomous human being; and reducing notions of obedience and deference to authority. Blame is thus extricated from the healthcare relationship, reshaping the traditionally adversarial components of the interaction, and eliminating the view of adherence as a patient problem in need of patient‐centred interventions. (shrink)

The American Journal of Bioethics, Volume 12, Issue 5, Page 40-41, May 2012.

Communicable diseases, especially those that are readily contagious, are on the rise as evidenced by the emergence of viruses like severe acute respiratory syndrome, the global resurgence of resistant forms of ancient mycobacteria such as extensively drug resistant tuberculosis, and the 2009 swine flu outbreak in Mexico. Moreover, each of us, no matter who we are or where we live, is just as likely to transmit contagious diseases to others as we are to contract such diseases from others. As cogently (...) described in the title of a recent book by Margaret Battin et al., we are all potential “victims and vectors.”Just as contagious diseases are readily passed person to person, so too can they readily be passed across local and national boundaries. We therefore all have a stake in the development of effective infectious disease control policies on a national scale, with “effective” being the operative term: regulations and statutes that are neither enforceable nor likely to be complied with may do more harm than good. (shrink)

In this paper, we explore the role of reciprocity in the employment of restrictive measures in contexts of contagion. Reciprocity should be understood as a substantive value that governs the use, level and extent of restrictive measures. We also argue that independent of the role reciprocity plays in the legitimisation the use of restrictive measures, reciprocity can also motivate support and compliance with legitimate restrictive measures. The importance of reciprocity has implications for how restrictive measures should be undertaken when preparing (...) and evaluating public health responses to contagion. (shrink)

Tuberculosis is a major global public health challenge, and a majority of countries have adopted a version of the global strategy to fight Tuberculosis, Directly Observed Treatment, Short Course (DOTS). Drawing on results from research in Ethiopia and Norway, the aim of this paper is to highlight and discuss ethical aspects of the practice of Directly Observed Treatment (DOT) in a cross-cultural perspective.