Sponsor/research ethics boards (REB) communications about informed consent (IC) and time to local activation (LA): An NCIC CTG pilot study.

2011 ◽  
Vol 29 (15_suppl) ◽  
pp. 6131-6131
Author(s):  
M. Walker ◽  
A. Szeto ◽  
Z. Meng ◽  
B. E. Chen ◽  
R. M. Meyer
2021 ◽  
pp. 39-59
Author(s):  
Kevin D. Haggerty

This chapter accentuates some of the reasons why crime ethnographies can face difficulties with the ethics review process, including prominent issues relating to informed consent, risk and harm, anonymity, and criminal behavior. Universities in most Western countries have established research ethics boards over the past twenty years responsible for assessing the ethical conduct of research. Qualitative research can fit poorly into the largely positivist ethics framework, resulting in an often-frustrating situation for ethnographers seeking to move ahead with their research. One paradox of this situation is that the ethics process itself seems poised to give rise to a subset of academic deviants in the form of crime ethnographers who may find that they are obliged to circumvent or disregard some formal ethical strictures in order to engage in ethnographic practices that otherwise seem uncontroversial or even innocuous.


2021 ◽  
Vol 4 (1) ◽  
pp. 34-61
Author(s):  
Kate McCandless

In research conducted using Twitter data, informed consent has taken the back seat. This literature review examines the perspectives of users, researchers and research ethics boards to provide nuance and context to the issue. Users are generally unaware that their data can be taken for research purposes and that they have agreed to be studied within the platform’s terms of service. This is concerning for both researchers and users alike, as it continues to blur the line of public and private information. Users want to be informed when they are being studied. When informed consent is not obtained, researchers are not respecting the data and the humans who created it. If researchers were required to obtain informed consent when engaging with Twitter data, the resulting research would be more ethical and protect everyone involved: the researcher, the user, and the university.


Author(s):  
Miraida Morales ◽  
Sarah Barriage

This poster presents a pilot study that analyzed a small corpus of informed consent forms used in research with children, adolescents, and adult early readers using Coh-Metrix, a readability measurement tool. Recommendations for increasing readability of consent forms in order to improve the informed consent process are also provided. Cette affiche présente une étude pilote qui a analysé un corpus restreint de formulaires de consentement éclairé utilisés dans la recherche avec les enfants, les adolescents et les lecteurs précoces adultes,  utilisant Coh-Metrix, un outil de mesure de la lisibilité. Nous fournissons également des recommandations pour augmenter la lisibilité des formulaires de consentement afin d'améliorer le processus de consentement éclairé.


Author(s):  
Steve Bruce

It is right that social researchers consider the ethical implications of their work, but discussion of research ethics has been distorted by the primacy of the ‘informed consent’ model for policing medical interventions. It is remarkably rare for the data collection phase of social research to be in any sense harmful, and in most cases seeking consent from, say, members of a church congregation would disrupt the naturally occurring phenomena we wish to study. More relevant is the way we report our research. It is in the disparity between how people would like to see themselves described and explained and how the social researcher describes and explains them that we find the greatest potential for ill-feeling, and even here it is slight.


SAGE Open ◽  
2020 ◽  
Vol 10 (1) ◽  
pp. 215824402091454
Author(s):  
Sukhee Ahn ◽  
Geum Hee Jeong ◽  
Hye Sook Shin ◽  
Jeung-Im Kim ◽  
Yunmi Kim ◽  
...  

This study, conducted in the Republic of Korea, analyzed nursing faculty members’ knowledge of and attitudes toward research ethics according to their characteristics and the institutional environment. A survey was conducted from April 24 to July 23, 2017. The participants were 210 nursing professors from 57 universities in Korea. The survey questionnaire gathered information on participants’ characteristics, their knowledge of and attitudes toward research ethics, and their perceived training needs. A relatively low difficulty index was found for knowledge items dealing with conflicts of interest (0.66), copyright (0.65), and plagiarism and duplicate publications (0.17) than for the other six items. Of the 12 items assessing attitudes toward research ethics, use of a plagiarism-checking program and reviewing manuscripts from members of one’s own research group had the lowest scores. The knowledge level of participants whose institutions provided a plagiarism-checking program was higher than those whose institutions did not. Former group also showed better attitudes toward research ethics. High-priority training needs were obtaining institutional review board (IRB) approval, writing informed consent forms, and obtaining informed consent for studies on children and pregnant women. A more intensive training program for nursing faculty is required on specific topics, including conflicts of interest, copyright, plagiarism, duplicate publications, IRB approval, and informed consent. Furthermore, all nursing institutions in Korea should provide a plagiarism-checking program to faculty members.


2011 ◽  
Vol 20 (1) ◽  
pp. 115-129 ◽  
Author(s):  
J. DEBORAH SHILOFF ◽  
BRYAN MAGWOOD ◽  
KRISZTINA L. MALISZA

The process of research is often lengthy and can be extremely arduous. It may take many years to proceed from the initial development of an idea through to the comparison of the new modalities against a current gold-standard practice. Each step along the way involves rigorous scientific review, where protocols are scrutinized by multiple scientists not only in the specific field at hand but related fields as well. In addition to scientific review, most countries require a further review by a panel that will specifically address the ethics of the proposed research. In Canada, those panels are referred to as Research Ethics Boards (REB), with the United States counterparts known as Institutional Review Boards (IRB).


Author(s):  
Patrick J. Fahy

Ethics review of research involving humans is intended to protect human dignity by balancing harms and benefits. The foci and methods used in reviews vary nationally, but tend, as in Canada, to address core principles including free and informed consent, privacy and confidentiality, inclusiveness and fairness, and the rights of dependent subjects. Under examination in relation to the policy that governs research ethics in Canada, the Tri-Council Policy Statement (TCPS, 2005), these principles admit numerous exceptions, a fact that, as shown by a study reported here, is better understood by those actually engaged in research than those who are not. The implications of these findings, and the specific priorities of non- Canadian researchers (especially those in developing nations), are described and discussed.


Author(s):  
David Clark

In this chapter, the author argues for a strict interpretation of research ethics when conducting online research, and in the process, discusses these four ethical categories: the presence of the researcher in the researched context, the blurring lines between “public” and “private,” informed consent and confidentiality. In making his argument, he draws on examples from a case study in which he examined an organization that meets both online and face-to-face.


2020 ◽  
pp. medhum-2019-011812
Author(s):  
Jeff Nisker

Although Juliet’s claim, ‘What’s in a name? That which we call a rose by any other name would smell as sweet’, may apply to family names, ‘that which we call’ embryos and procedures in reproductive genetics often smell sweet because the names were created to perfume not-so-sweet-smelling practices. Reproductive-genetic scientists and clinicians, including myself, have used perfumed names to make our research smell sweet for research ethics boards, research grant funders, government regulators, hospital administrators and the general public. The sweet-smelling names in reproductive genetics explored here include ‘pre-embryo’, preimplantation genetic ‘diagnosis’, ‘normal’ embryo, ‘suitable’ embryo, ‘healthy’ embryo, preimplantation genetic ‘testing’, ‘non-invasive prenatal testing’, ‘donation’, and most recently ‘mitochondrial replacement therapy’, a sweet-smelling name for germline nuclear transfer prohibited in antireproductive cloning legislation in most countries. In order for informed choices to occur for women who come to clinicians for information regarding reproductive genetics, and for transparency of scrutiny by research ethics boards, governmental regulators and the general public, it is essential that we consider the real meaning of sweet-smelling names in reproductive genetics.


2019 ◽  
Vol 15 (2) ◽  
pp. 1-21 ◽  
Author(s):  
Eva Zschirnt

Correspondence testing to research discrimination in the marketplace has become common and the use of internet applications has allowed researchers to send greater numbers of applications. While questions of research ethics always arise when planning a correspondence test, the issue receives relatively little attention in published correspondence tests. This paper addresses the question of ethics in correspondence testing in the age of ready internet access. It focusses on the ethical issues that arise in correspondence testing, looking at potential problems (regarding voluntary participation, informed consent, deception, entrapment of employers, employers’ rights) and possible solutions, and technical challenges. European country examples show that the ethical questions raised in correspondence testing have to be renegotiated depending on the national context. The paper argues that correspondence testing, if planned carefully and executed responsibly, can meet most of the ethical requirements of Social Science ethics guidelines.


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