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How a simple ‘thank you’ could improve clinical trials – Nature (Editorial | November 2018)0

Posted by Admin in on December 11, 2018
 

Everyone would benefit if researchers did more to make participants feel part of a study.

When researchers at the drug giant Pfizer wanted to improve their clinical trials, the people who had taken part had a clear suggestion: researchers should say thank you.

It is a simple request, but a revealing one. When a clinical trial is completed, many participants walk away empty-handed. Most never hear from the investigators or the trial’s sponsor again. Many do not learn the results of the study in which they took part. It’s not good enough — and it indicates a deeper problem.

As we discuss in a News Feature this week, clinical-trial participants and the people who care for them are increasingly seen as partners in research. They are more informed than ever about their conditions and their medical options. And they are demanding — and receiving — more of a say in how clinical trials are designed and conducted. Some of this activity has been boosted by social media, which has allowed people with medical conditions and their carers to band together, share their experiences and advocate for change.

Read the rest of this discussion piece

 

The Ethical Quandary of Human Infection Studies – Undark (Linda Nordling | November 2018)0

Posted by Admin in on December 4, 2018
 

Sometimes infecting volunteers with a disease can lead to new treatments. But how much risk and compensation is acceptable for those in poor nations

IN FEBRUARY OF last year, 64 healthy adult Kenyans checked into a university residence in the coastal town of Kilifi. After a battery of medical tests, they proceeded, one by one, into a room where a doctor injected them with live malaria parasites. Left untreated, the infection could have sickened or even killed them, since malaria claims hundreds of thousands of lives every year.

This excellent piece about researchers from affluent countries conducting ‘infection studies’ in poor countries raises issues you might not have considered.

But the volunteers — among them casual laborers, subsistence farmers, and young mothers from nearby villages — were promised treatment as soon as infection took hold. They spent the next few weeks sleeping, eating, and socializing together under the watchful eye of scientists, giving regular blood samples and undergoing physical exams. Some grew sick within a couple of weeks, and were treated and cleared of the parasite before being sent home. Those who did not fall ill were treated after three weeks as a precaution and discharged, too.
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As compensation, the volunteers received between $300 and $480 each, or roughly $20 a day, a rate based on the minimum wage for casual laborers in Kenya and the out-of-pocket allowance set for overnight stays by KEMRI, the Kenya Medical Research Institute.
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Read the rest of this discussion piece

Respect for Human Vulnerability: The Emergence of a New Principle in Bioethics (Papers: Henk ten Have | 2015)0

Posted by Admin in on November 30, 2018
 

Abstract
Vulnerability has become a popular though controversial topic in bioethics, notably since 2000. As a result, a common body of knowledge has emerged (1) distinguishing between different types of vulnerability, (2) criticizing the categorization of populations as vulnerable, and (3) questioning the practical implications. It is argued that two perspectives on vulnerability, i.e., the philosophical and political, pose challenges to contemporary bioethics discourse: they re-examine the significance of human agency, the primacy of the individual person, and the negativity of vulnerability. As a phenomenon of globalization, vulnerability can only be properly addressed in a global bioethics that takes the social dimension of human existence seriously.

Keywords
Global bioethics, Globalization, Vulnerability, Research ethics, Philosophy of medicine

ten Have, H. Respect for Human Vulnerability: The Emergence of a New Principle in Bioethics. Bioethical Inquiry (2015) 12: 395. https://doi.org/10.1007/s11673-015-9641-9
Publisher: https://link.springer.com/article/10.1007/s11673-015-9641-9

Vulnerability: new essays in ethics and feminist philosophy (Books: Catriona Mackenzie (Editor), et al | 2014)0

Posted by Admin in on November 30, 2018
 

The aim of this volume is to open up reflection on the nature of vulnerability, the responsibilities owed to the vulnerable, who bears these responsibilities, and how they are best fulfilled. In canvassing responses to these questions, the contributors engage with a range of ethical traditions and with issues in contemporary political philosophy and bioethics. Some essays in the volume explore the connections between vulnerability, autonomy, dignity, and justice. Other essays engage with a feminist ethics of care to articulate the relationship between vulnerability, dependence, and care. These theoretical approaches are complemented by detailed examination of vulnerability in specific contexts, including disability; responsibilities to children; intergenerational justice; and care of the elderly. The essays thus address fundamental questions concerning our moral duties to each other as individuals and as citizens. Contributing significantly to the development of an ethics of vulnerability, this volume opens up promising avenues for future research in feminist philosophy, moral and political philosophy, and bioethics.

Keywords:
Vulnerability, ethics, moral theory, bioethics, feminist philosophy, autonomy, dependence, justice, ethics of care, children

Mackenzie, C., Rogers, W. & Dodds, S.. (2014). Vulnerability: New Essays in Ethics and Feminist Philosophy, OUP USA.
Amazon: https://www.amazon.com/Vulnerability-Essays-Feminist-Philosophy-Studies/dp/0199316651
Google Books: https://books.google.com.au/books/about/Vulnerability.html?id=6W9MAQAAQBAJ&redir_esc=y
Publisher: https://global.oup.com/academic/product/vulnerability-9780199316649?cc=au&lang=en&