The Economy of Social Data: Exploring Research Ethics as Device

2011 ◽  
Vol 59 (2_suppl) ◽  
pp. 113-129 ◽  
Author(s):  
Ana Gross

The following article argues that research ethics and data regulatory frameworks can be understood as devices that articulate a particular kind of social data economy. Following Waldby and Mitchell's (2006) work on biological material economies it explores how social research ethics and data regulatory frameworks in the United Kingdom, organized around the notions of informed consent and anonymization, have favoured a model in which privacy is disentangled from the human agency to which it makes reference in order to be converted and objectified as data. Informed consent and anonymization are hence here analysed as devices which enable the circulation, exchange and valuation of data, or in other words, as devices which enable the conversion of privacy into property. In particular, the paper argues that informed consent enacts a legitimate transaction between data subject and data controller and can be therefore understood as a surrogate property contract. On the other hand, anonymization, which works by suppressing the author function, renders singular data units commensurable and aggregatable in the form of databases, a procedure which supports the emergence of a specific set of property rights. Finally, the conclusion critically addresses the work of ethics as a device as new datascapes organized by the principle of traceability produce ‘the human’ as disaggregated and distributed.

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.


Author(s):  
Eugenijus Gefenas ◽  
J. Lekstutiene ◽  
V. Lukaseviciene ◽  
M. Hartlev ◽  
M. Mourby ◽  
...  

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.


1992 ◽  
Vol 18 (1-2) ◽  
pp. 37-71
Author(s):  
Frances H. Miller

Health care rationing has gained greater visibility in the United States and the United Kingdom, for quite different reasons. As patients in both countries become more aware that potentially beneficial medical services can be denied them on economic — as opposed to purely medical — grounds, they are beginning to seek help from the judiciary. This Article contends that as rationing becomes more explicit, the doctrine of informed consent will come under increased pressure. The Article suggests that courts and legislatures consider imposing a legal obligation on physicians to inform their patients when potentially effective treatment is to be withheld for economic or other non-clinical reasons.


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.


2013 ◽  
Vol 62 (3) ◽  
pp. 599-627 ◽  
Author(s):  
Clíodhna Murphy

AbstractWhile the rights of domestic workers are expanding in international law, including through the adoption of the ILO Domestic Workers Convention in 2011, migrant domestic workers remain particularly vulnerable to employment-related abuse and exploitation. This article explores the intersection of the employment law and migration law regimes applicable to migrant domestic workers in the United Kingdom, France and Ireland. The article suggests that the precarious immigration status of many migrant domestic workers renders employment protections, such as they exist in each jurisdiction, largely illusory in practice for this group of workers. The labour standards contained in the Domestic Workers Convention, together with the recommendations of the UN Committee on Migrant Workers on the features of an appropriate immigration regime for migrant domestic workers, are identified as providing an alternative normative model for national regulatory frameworks.


Author(s):  
Sarah J. L. Edwards ◽  
Tracey Stone ◽  
Teresa Swift

Objectives:To examine differences in the ethical judgments made by Research Ethics Committees (RECs) or Institutional Review Boards (IRBs).Methods:We did a review of the literature and included any study that attempted to compare the ethical judgments made by different RECs or IRBs when reviewing one or more protocol.Results:There were twenty-six articles reporting such discrepancies across Europe, within the United Kingdom, Spain, and United States. Of these studies, there were only five reports of some RECs approving while others rejecting the same protocol. All studies, however, reported differences in the clarifications and revisions asked of researchers regarding consent, recruitment, risks and benefits, compensation arrangements, and scientific issues.Conclusions:The studies were generally anecdotal reports of researchers trying to do research. New rules requiring a single ethical opinion for multi-site research at least in European Member States may simply conceal problematic issues in REC decision making. In the last analysis, we should expect a certain degree of variation and differences if we are to keep a committee system of review, although there is a pressing need to investigate the way in which RECs make these judgments. In particular, we need to identify the source of any aberrations, distortions, or confusions that could arbitrarily affect these judgments. Furthermore, local conditions remain important ethical considerations and should not be sidelined in pursuit of greater “consistency.”


2017 ◽  
Vol 15 (1) ◽  
pp. 1-16 ◽  
Author(s):  
Merle Spriggs ◽  
Lynn Gillam

Child co-research has become popular in social research involving children. This is attributed to the emphasis on children’s rights and is seen as a way to promote children’s agency and voice. It is a way of putting into practice the philosophy, common amongst childhood researchers, that children are experts on childhood. In this article, we discuss ethical complexities of involving children as co-researchers, beginning with an analysis of the literature, then drawing on data from interviews with researchers who conduct child co-research. We identify six ethical complexities, some of which are new findings which have not been mentioned before in this context. In light of these possible ethical complexities, a key finding is for researchers to be reflexive – to reflect on how the research may affect child co-researchers and participants before the research starts. A separate overriding message that came out in responses from the researchers we interviewed was the need for support and training for child co-researchers. We conclude by providing a list of questions for reflexive researchers to ask of themselves when they use child co-research methodology. We also provide important questions for human research ethics committees to ask when they review projects using child co-research.


PEDIATRICS ◽  
1984 ◽  
Vol 74 (2) ◽  
pp. 303-305
Author(s):  

The "Red Book," as the Report of the Committee on Infectious Diseases has come to be known, is not a static document, but is subject to frequent revision. Not only does each edition contain new information available to the Committee, but between editions the Committee communicates further changes to the medical profession via Pediatrics. These communications constitute "Updates" to the Red Book. As everyone knows, scientific information proliferates exponentially, and so the Updates have appeared more frequently in recent years. The Update that follows concerns pertussis vaccine, and therefore, it supplements information in the 1982 edition of the Red Book. To place it in context, the entire Red Book section on Pertussis (pp 198 to 202) should be reviewed, as well as the general sections on immunization, particularly the section on Informed Consent (p 4) and the section on Vaccine Dose (p 10). Like many preventable childhood diseases, pertussis is now infrequently reported in this country. Although more than 200,000 cases were reported annually in the 1930s before pertussis vaccine was introduced, only about 2,000 cases are now recognized each year. The success of the vaccine has resulted in the remarkable decline of a formerly feared illness. As the incidence of the disease has declined, adverse reactions attributed to pertussis vaccine have received greater attention and prominence. In the United Kingdom, following Professor G. T. Stewart's alarming reports of brain damage due to pertussis vaccine, immunization rates fell profoundly, and as a result widespread outbreaks of pertussis began to occur.


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