Silent Partners

2016 ◽  
Author(s):  
Rebecca Dresser
Keyword(s):  
Healthy Volunteers ◽  
Research Ethics ◽  
Human Subject ◽  
Large Body ◽  
Research Participation ◽  
Drop Out ◽  
Research Subjects ◽  
Human Subject Protection ◽  
Ethical Research ◽  
Regulatory Standards

Scientists and ethicists often speak of subjects as partners in research, but the reality is quite different. Experienced subjects are rarely appointed to the committees that create guidelines for ethical research or the committees that review individual studies to determine whether they meet ethical and regulatory standards. Yet experienced research subjects can make valuable contributions to research ethics. People who have been in studies know facts about the experience that others may overlook. Their experience as subjects gives them special insights into ethics too. Experienced subjects know about problems that can lead people to refuse to join studies or to drop out before studies are complete. A large body of work describes the perceptions and viewpoints of people who have participated in research, but experts rarely use this material to guide improvements in human subject protection. Although subjects have the power to decide whether to participate in a study, they have little control over anything else that goes on in research. Silent Partners moves research subjects to the forefront, examining what research participation is like for healthy volunteers and patients and explaining why subjects’ voices should influence research ethics. Silent Partners shows how experienced research subjects can become real—not just symbolic—partners in research.

Vulnerability as a Regulatory Category in Human Subject Research

2009 ◽  
Vol 37 (1) ◽  
pp. 12-18 ◽  
Author(s):  
Carl H. Coleman
Keyword(s):  
Research Ethics ◽  
Human Subject ◽  
Institutional Review Boards ◽  
Human Subject Research ◽  
Human Subject Protection ◽  
Research Ethics Review ◽  
Institutional Review ◽  
Research Regulations ◽  
Vulnerable Subjects ◽  
The Common

The concept of vulnerability has long played a central role in discussions of research ethics. In addition to its rhetorical use, vulnerability has become a term of art in U.S. and international research regulations and guidelines, many of which contain specific provisions applicable to research with vulnerable subjects. Yet, despite the frequency with which the term vulnerability is used, little consensus exists on what it actually means in the context of human subject protection or, more importantly, on how a finding of vulnerability should affect the process of research ethics review.The Common Rule, the centerpiece of the U.S. human subject protection regulations, uses the word vulnerable three times. First, it provides that institutional review boards (IRBs) that regularly review research involving a vulnerable category of subjects should consider including one or more individuals who are knowledgeable about and experienced in working with these subjects.

scholarly journals 《赫爾辛基宣言》縱橫談

2002 ◽  
Vol 4 (2) ◽  
pp. 85-118
Author(s):  
Yali CONG
Keyword(s):  
Research Ethics ◽  
Human Subject ◽  
Ethical Issues ◽  
Historical Review ◽  
Practical Significance ◽  
Moral Pluralism ◽  
Nuremberg Code ◽  
The West ◽  
Human Subject Protection ◽  
Declaration Of Helsinki

LANGUAGE NOTE | Document text in Chinese; abstract also in English.自從20世紀80年代末，隨著中國和其他國家在生物醫學科研上合作的增多，與之有關的倫理問題隨之增加。尤其是20世紀以來，如果說科研倫理學是生命倫理學領域的一顆新星不過分的話，那麼，赫爾辛基宣言就是科研倫理學的核心的說法是很恰當的。為了提高科研倫理學的意識，保護受試者的權益，預防潛在的倫理問題的發生，順著赫爾辛基宣言發展的歷史並找尋其中變遷的線索是非常必要的。具體來說，從紐倫堡法典產生的背景和內容開始，追溯1964、1975、1983、1989、1996、2000和2002年赫爾辛基宣言變化的原因，並把主要變化的內容單獨注出來，以利於讀者進行比較分析。探詢歷史發展的軌跡，是為了從中吸取經驗教訓，完善對受試者保護權益保護的機制。本文所有的材料都是為了這個目的服務的。關於國際前沿性的對最新的赫爾辛基宣言的爭論，讀者頭腦中要有各國對科研倫理學原則的多元化的理解這樣一個概念，同時要知道聲音最大的背後的原因，而且更重要的是要有結合中國實際情況的意識，以及是否適合中國的情況的分析，否則仍要停留在被動盲從的地位，不能真正實現科研倫理學應有的實踐性價值。Along with the development of biomedical research cooperation between China and other countries since late 1980s, many ethical issues have occurred. It is not exaggerating to claim that research ethics is a bright star in the field of bioethics, especially since the end of the 20th-century. It is also appropriate to say that the Declaration of Helsinki consists of the core of contemporary research ethics. This paper will trace the history of Declaration of Helsinki and seek for the clue for positive changes. To do so should be able to help to raise the consciousness of research ethics in people, to protect the rights and welfare of human subjects, and to prevent some potential ethical problems from happening.This article will describe in detail on the background from the Nuremberg Code to the Declaration of Helsinki and on changes happened in different versions of the Declaration of Helsinki in 1964, 1975, 1983, 1989, 1996, 2000 and 2002. The obvious and significant changes of different versions will be highlighted for the convenience of the reader. The aim of this historical review is to learn the experiences and related lessons in the West and thus to develop the system of human subject protection in China. All the materials of the article are directed to this aim. Regarding the current ethical debates on the latest version of the Declaration of Helsinki, we should be aware of the moral pluralism and plurality among different countries. It is important to analyze and understand the strongest voice in the debate and the background of this voice.Yet, the most challenging task is to find out what is suitable for our country- China- - and what is not. In other words, while we need to learn from the West about human subject protection such as the historic and influential document like the Declaration of the Helsinki, it is crucial to root Chinese research ethics in our particular conditions in China. Otherwise, we will always in the status of simply following the West blindly and cannot fulfill the practical significance of research ethics in Chinese reality.DOWNLOAD HISTORY | This article has been downloaded 22 times in Digital Commons before migrating into this platform.

What makes clinical labour different? The case of human guinea pigging

2018 ◽  
Vol 44 (9) ◽  
pp. 638-642 ◽  
Author(s):  
Joanna Różyńska
Keyword(s):  
Healthy Volunteers ◽  
Research Participation ◽  
Hourly Wage ◽  
Full Time ◽  
Research Subjects ◽  
Unskilled Labour ◽  
Wage Payment ◽  
Part Time ◽  
Research Volunteers

Each year thousands of individuals enrol in clinical trials as healthy volunteers to earn money. Some of them pursue research participation as a full-time or at least a part-time job. They call themselves professional or semiprofessional guinea pigs. The practice of paying healthy volunteers raises numerous ethical concerns. Different payment models have been discussed in literature. Dickert and Grady argue for a wage-payment model. This model gives research subjects a standardised hourly wage, and it is based on an assumption that research participation is morally indistinguishable from other forms of unskilled labour. In this paper, I will challenge this assumption. I will argue that human guinea pigging has particular characteristics which taken together make it significantly different from other forms of labour. (1) Participation in research is skill-independent. Healthy volunteers are valuable not because they are skilful persons, but because they are human bodies. (2) The role of research volunteers is mainly passive. They are not asked to produce goods or deliver services. They are paid for enduring unpleasant, painful and risky interventions performed by investigators. (3) Research volunteering involves inherent risks and uncertainties, and subjects have little or no control over their minimisation and materialisation. I conclude that participation in clinical research is a specific kind of activity. It is more like renting out one’s body to strangers, than working. Thus, research participation should not be treated on par with other forms of employment.

A Conversation with Research Ethics Boards About Inclusive Research with Persons with Intellectual and Developmental Disabilities

2019 ◽  
pp. 185-196
Author(s):  
Virginie Cobigo ◽  
Lynne A. Potvin ◽  
Casey Fulford ◽  
Hajer Chalghoumi ◽  
Mariam Hanna ◽  
...  
Keyword(s):  
Developmental Disabilities ◽  
Research Ethics ◽  
Research Participation ◽  
Third Parties ◽  
Intellectual And Developmental Disabilities ◽  
Ethical Considerations ◽  
Ethical Research ◽  
Research Ethics Boards ◽  
The Right ◽  
Current Practices

Persons with intellectual and developmental disabilities (IDD) have the right to participate in research with dignity and respect. Information about persons with IDD is often acquired from third parties; however, they are capable of, and want to be included in, research. Nevertheless, current practices to protect persons with IDD from harm may preclude them from participating in research. Therefore, inclusive research requires ethical and practical considerations to ensure that persons with IDD are treated fairly. In this chapter, experiences and recommendations in four aspects of ethical research with persons with IDD are shared: (1) accessibility, (2) consent, (3) confidentiality, and (4) research participation risks. Interactions with research ethics boards are used to illustrate the complexity of these ethical considerations and the need for guidelines.

Human Subject Protection and Special Population Issues

2010 ◽  
pp. 247-266
Author(s):  
Christine Moretto Wishnoff ◽  
Pamela Hayes-Shell ◽  
David Shore ◽  
Cheryl Anne Boyce
Keyword(s):  
Human Subject ◽  
Special Population ◽  
Human Subject Protection

Ethics in Research and Teaching

2019 ◽  
pp. 59-86
Author(s):  
Deniz Zaptcioglu Celikdemir
Keyword(s):  
Research Ethics ◽  
Research Methods ◽  
Critical Points ◽  
Research Method ◽  
Vital Role ◽  
Ethical Research ◽  
Ethical Codes ◽  
Research And Teaching ◽  
Unethical Behaviors ◽  
Ethics In Research

The chapter aims to explain the importance of ethics in research and teaching. First, it focuses on ethical studies. It expresses the implications that are necessary for a study to be ethical. The researcher has a vital role in conducting an ethical research. There are some critical points, which the researcher should take into account. For each field, various research methods are used. Therefore, different ethical codes and implications should be adapted in accordance with the research method in order to have ethical studies. In addition to research ethics, researchers also have a responsibility as an author to share his/her research with others by publishing it. Unethical behaviors such as fabrication, falsification, plagiarism will be explained. Lastly, a lecturer is responsible for giving lectures, teaching, and assessing the students. For a lecturer to assess its students fairly, s/he should be ethical. The lecturer should provide ethics in teaching.

Research ethics

2021 ◽  
pp. 57-82
Author(s):  
Aaron Williamon ◽  
Jane Ginsborg ◽  
Rosie Perkins ◽  
George Waddell
Keyword(s):  
Research Ethics ◽  
Professional Associations ◽  
Research Activity ◽  
Ethical Research ◽  
Ethical Approval ◽  
Music Research ◽  
Potential Benefits ◽  
Regulatory Bodies ◽  
Scientific Value ◽  
Selection Of

Chapter 3 of Performing Music Research explores the guiding principles on which ethical codes are based. These can be summarized as follows: people should not be harmed, nor their rights and dignity compromised, and research must be of scientific value and carried out with integrity. These issues must be considered and addressed in the earliest stages of research and in light of the potential benefits of the findings of the research to society. The chapter reflects on the philosophical underpinnings of ethical research and outlines the process whereby ethical approval is typically sought and obtained, with reference to a selection of codes of research ethics published by professional associations and regulatory bodies that guide and inform research activity.

Research Ethics

2020 ◽  
pp. 113-130
Author(s):  
Dariusz Jemielniak
Keyword(s):  
Social Studies ◽  
Research Ethics ◽  
Moral Obligation ◽  
Ethics Committees ◽  
Internet Research ◽  
Research Subjects ◽  
Use Of Data ◽  
Improper Use ◽  
High Flexibility ◽  
Digital Studies

Accepting ethic norms involves naturalization of beliefs, assuming them as unalterable truths. Social sciences have been inscribed with certain standards for years. In the last twenty-five years, the practice of having research projects approved by ethics committees has become institutionalized, in some cases leading to extreme bureaucracy and changing the character of the issue, shifting the weight from the personal moral obligation of the researcher and an issue that requires high flexibility and individualism towards a set of forms to be filled out, pseudo-warrants of the safety of the research subjects. However, Internet research has opened the eyes of the sociologists to new problems and caused reconsideration of some issues of research ethics. This chapter discusses key notions of research ethics in the digital studies context. It shows how internet can be a source of infamy, and warns against improper use of data. It positions the fundamental rules of anonymity, privacy, informed consent, data ownership, as well as data confidentiality in the context of digital social studies.

Making Ethics Work in Collaborative Projects

2005 ◽  
Vol 11 (3) ◽  
pp. 101
Author(s):  
Emily Mauldon
Keyword(s):  
Health Care ◽  
Primary Health Care ◽  
Research Ethics ◽  
Health Care Professionals ◽  
Ethics Committees ◽  
Research Process ◽  
Ethical Review ◽  
Ethical Research ◽  
Team Members ◽  
Primary Health

This article discusses problems a research team had managing their ethical obligations during a short project, and considers the implications of these problems for better understanding and carrying out ethical research in the future. Two key points will be proposed. Initially, it will be argued that the culture of ethical research as articulated within the research community may not be universally accepted within the primary health care sector. The nature of "ethical conduct" within clinical practice, service provision and research is not the same. Further, practical difficulties the researchers experienced while trying to gain approval from ethics committees and implement the proposed research plan highlight some ways in which institutional ethical review processes are structurally unsuited to the requirements of small collaborative projects. Understanding the different ways in which the term "ethics" is used will allow for a more expedient translation of concepts between different health professionals. Recognising the practical constraints ethical review places on the research process may help reduce some of the frustration primary health care professionals can experience when faced with the requirements of research ethics committees. Due to the history of, and cultural commitment to, ethical research within the university sector, those with formal academic training in research are well placed to assume responsibility for managing the ethics process when involved in cross-sectoral research. This responsibility may include the need to educate team members and study participants about the importance of research ethics.

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