The ethics of health care rationing

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Ethical Challenges in Implementation Research

Implementation research is increasingly common in developing countries as a way of studying the introduction to the population of health interventions that have been proven to be effective elsewhere. Implementation studies are often conducted as cluster randomized trials, a design that raises ethical and conceptual questions different from those in conventional randomized controlled trials. It is often unclear who the subjects of the research are, informed consent may be difficult or impossible to obtain and controversy surrounds the use of comparison clusters that provide substandard care to the population where the research is carried out. An examination of protocols for this type of research reveals uncertainty on the part of researchers themselves about whom or what they are studying and from whom (if anyone) informed consent is required.

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TB/HIV: Distinct Histories, Entangled Futures. Towards an Epistemology of Co-infection

One office, two diseases, two disciplines. That’s where we started. And while sharing an office as post-doctoral researchers at the University of Zürich, that’s where we stumbled upon one of those “epistemological obstacles” – to use Gaston Bachelard’s famous expression – when we were trying to think about two distinct diseases, tuberculosis (TB) and HIV/AIDS, as an entangled object of co-infection, in short as TB/HIV. Dubbed as ‘double trouble’, ‘perfect storm’, ‘deadly duo’ or ‘deadly liaison’, TB/HIV is understood to be a blending of the two deadliest epidemics of the 20th century: “In 2007, 1.37 million people infected with HIV were estimated to be coinfected with TB, according to the World Health Organization, and 1 of 4 deaths from TB is now HIV related” (Mayer and Dukes Hamilton 2010) and “living with HIV, dying of TB” has become the morbid slogan to describe the often preventable outcome of this steadily emerging global health crisis.

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“It’s my blood”: ethical complexities in the use, storage and export of biological samples: perspectives from South African research participants

Background: The use of biological samples in research raises a number of ethical issues in relation to consent, storage, export, benefit sharing and re-use of samples. Participant perspectives have been explored in North America and Europe, with only a few studies reported in Africa. The amount of research being conducted in Africa is growing exponentially with volumes of biological samples being exported from the African continent. In order to investigate the perspectives of African research participants, we conducted a study at research sites in the Western Cape and Gauteng, South Africa.

Methods: Data were collected using a semi-structured questionnaire that captured both quantitative and qualitative information at 6 research sites in South Africa. Interviews were conducted in English and Afrikaans. Data were analysed both quantitatively and qualitatively.

Results: Our study indicates that while the majority of participants were supportive of providing samples for research, serious concerns were voiced about future use, benefit sharing and export of samples. While researchers view the provision of biosamples as a donation, participants believe that they still have ownership rights and are therefore in favour of benefit sharing. Almost half of the participants expressed a desire to be re-contacted for consent for future use of their samples. Interesting opinions were expressed with respect to export of samples.
Conclusions: Eliciting participant perspectives is an important part of community engagement in research involving biological sample collection, export, storage and future use. A tiered consent process appears to be more acceptable to participants in this study. Eliciting opinions of researchers and research ethics committee (REC) members would contribute multiple perspectives. Further research is required to interrogate the concept of ownership and the consent process in research involving biological samples.

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Hartmann Stahelin (1925–2011) and the contested history of cyclosporin A

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Inequality in health

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Pharmacovigilance and Public Health Ethics

Traditionally, bioethics has focused on the
obligations of healthcare professionals and the rights of
individual patients as well as participants in clinical
research. However, in recent years, this center of attention
has been questioned and a new ‘‘Public Health Ethics’’ has
emerged. It argues that when dealing with ethical issues
related to research or interventions, the health of groups
and populations should be considered and not only that of
individuals. This article reviews the background to the
current debate on Public Health Ethics as well as some
ethical theories and principles guiding its development.
Following a discussion of issues in pharmacovigilance with
an ethical dimension, the article explores the potential
implications of the emergence of a Public Health Ethics
perspective for regulatory pharmacovigilance as a public
health activity. In summary it appears that this new perspective
may offer a new take on ethical issues in pharmacovigilance
and provide guidance as to when public
health paternalism is justified or when the public good
should take precedence over rights of individuals.

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End of life care and decision making

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Survivorship, Infertility and Parenthood: Experiencing Life after Cancer in Puerto Rico

While incidence rates are increasing for many cancers in Puerto Rico, mortality rates are declining (Torres-Cintron, et al. 2010), resulting in growing numbers of survivors and creating a situation in which long-term survivorship concerns are beginning to emerge as priorities. The importance of quality-of-life among survivors of cancer is increasingly being recognized among healthcare providers, although there remains a gap in knowledge of how young adult survivors cope with long-term treatment- related physical effects, such as infertility, and of the impact of cancer on survivors’ social relationships and future goals.
Because understandings of “cancer survivorship,” as well as of reproduction, vary according to cultural context, this study examined the physical and social impact of cancer on young adults in Puerto Rico, and specifically the importance of parenthood. A media analysis of women’s magazines, key informant interviews with ten cancer researchers, as well as in-depth, semi-structured interviews with 23 young adult cancer survivors, 16 healthcare providers, nine cancer advocates, and two members of the clergy were conducted in order to shed light on the lived experiences, needs, and concerns of young Puerto Rican cancer survivors.

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What are the implications of changing treatment delivery models for patients with inflammatory bowel disease: a discussion paper

An integrated model of care has been used effectively
to manage chronic diseases; however, there is limited,
yet encouraging evidence on its introduction in the
management of inflammatory bowel disease (IBD), a
chronic gastrointestinal condition. Here, the rationale for
and implications of introducing an integrated model of care
for patients with IBD are discussed, with a particular focus
on psychology input, patient-centred care, efficiency as
perceived by patients and doctors, financial implications
and the possible means of model introduction. This is a
discussion paper on the integrated model of care for IBD
against a background of what has been learned from an
integrated model of care established in other chronic
conditions. Although limited, the emerging data on an
integrated model of care in IBD are encouraging with
respect to patient outcomes and savings in healthcare
costs. In other conditions, the model has been well
received by both patients and practitioners, although the
loss of autonomy by doctors is listed among its drawbacks.
The cost-effectiveness data are now sufficiently convincing
to recommend the model’s acceptance in principle. The
model should be promoted at the policy level rather than
by individual practitioners to facilitate equal access for
patients with IBD on a larger scale than currently.

Eur J
Gastroenterol Hepatol 25:393–398 c 2013 Wolters Kluwer
Health | Lippincott Williams & Wilkins.

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Nonconfrontational Rationality or Critical Reasoning

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Unprecedented Choices

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The protection of medical data - Challenges of the 21st century

The regulation of the processing of medical data is a major topic of discussion in Medical Law and in IT Law. Its significance results from the intensive use of information and communication technologies in healthcare and from the new threats their use creates to the rights and freedoms of citizens. The contributors were selected in order to yield a multidisciplinary approach.

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Comparative Biobank Governance: Challenges, Strategies, Transformations

In recent years, a number of large population-based biobanks – genetic databases that combine genetic information derived from blood samples with personal data about environment, medical history, lifestyle or genealogy – have been set up in order to study the interface between disease, and genetic and environmental factors. Unsurprisingly, these studies have sparked a good deal of controversy and the ethical and social implications have been widely debated.

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“Cooperation between International Organisations in the Regulation of Biotechnology II: Access to Genetic Resources”, Genomics Monitor Issue 8, Bradford, University of Bradford.

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Risks in the Making: Travels in Life Insurance and Genetics

In recent decades, insurance companies, scientists, and public officials have debated the potential use of genetic testing in insurance decisions. With Risks in the Making, Ine van Hoyweghen alters the terms of the debate, moving it from abstract, theoretical grounds to the question of how insurance companies actually work.

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The Politics of Biotechnology in North America and Europe: Policy Networks, Institutions and Internationalization

Biotechnology is one of the most important new issues to emerge in the knowledge economy. The Politics of Biotechnology in North America and Europe provides analysts with a perspective on policy-making in scientifically advanced countries that integrate the insights of several approaches and that display a particular sensitivity to the complexity of policy-making conjectures

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