scholarly journals Controversies between regulations of research ethics and protection of personal data: informed consent at a cross-road

2021 ◽  
Author(s):  
Eugenijus Gefenas ◽  
J. Lekstutiene ◽  
V. Lukaseviciene ◽  
M. Hartlev ◽  
M. Mourby ◽  
...  
Keyword(s):  
Informed Consent ◽  
Research Ethics ◽  
Personal Data ◽  
Data Informed

scholarly journals Informed Consent: Is it Sacrosanct?

2005 ◽  
Vol 1 (3) ◽  
pp. 77-83 ◽  
Author(s):  
Alison Assiter
Keyword(s):  
Informed Consent ◽  
Medical Ethics ◽  
Research Ethics ◽  
Ethical Issues ◽  
Personal Data ◽  
Ethics Committees ◽  
Research Ethics Committees ◽  
Patient Consent ◽  
Human Participants ◽  
Alder Hey

Following Alder Hey and the earlier and much more extreme practices at Nuremberg, legislation has been developed governing the practice of medical ethics and research involving human participants more generally. In the medical context, relevant legislation includes GMC guidance, which states that disclosure of identifiable patient information without consent, for research purposes, is not acceptable unless it is justified in the public interest. There is a presumption, in other words, in favour of the view that patient consent ought to be obtained before any piece of research is conducted. The Data Protection Act, furthermore, requires informed consent to be given before any use of identifiable personal data is made for any purpose. Moreover, ensuring that the informed consent of participants is gained is common practice on most research ethics committees. I argue, in this paper, that applying the principle of ‘informed consent’ too mechanistically in the research ethics context risks undermining the very principle it is designed to support – the principle of autonomy. This issue has been much discussed in medical ethics but not so much, so far, in the research ethics context. It will be argued that a more discerning and a less rigid and mechanistic approach, applied by research ethics committees, may help ensure that ethical issues are properly considered.

The Economy of Social Data: Exploring Research Ethics as Device

2011 ◽  
Vol 59 (2_suppl) ◽  
pp. 113-129 ◽  
Author(s):  
Ana Gross
Keyword(s):  
Informed Consent ◽  
Research Ethics ◽  
Social Research ◽  
Social Data ◽  
The United Kingdom ◽  
Regulatory Frameworks ◽  
Data Controller ◽  
Singular Data ◽  
Data Informed ◽  
Data Subject

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.

scholarly journals Just Because the Data Is There, It Doesn’t Mean It’s Yours to Take

2021 ◽  
Vol 4 (1) ◽  
pp. 34-61
Author(s):  
Kate McCandless
Keyword(s):  
Informed Consent ◽  
Literature Review ◽  
Research Ethics ◽  
Private Information ◽  
Public And Private ◽  
Back Seat ◽  
Twitter Data ◽  
Research Ethics Boards ◽  
The University ◽  
Data Informed

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.

INFLUENCE OF OFFICE BLEACHING SYSTEMS ON THE RESISTANCE OF HARD TOOTH TISSUES

2020 ◽  
pp. 119-125
Author(s):  
Magsumova O.A. ◽  
Postnikov M.A. ◽  
Ryskina E.A. ◽  
Tkach T.M. ◽  
Polkanova V.A.
Keyword(s):  
Informed Consent ◽  
Oral Fluid ◽  
Personal Data ◽  
Acid Resistance ◽  
Non Invasive ◽  
Hard Tissues ◽  
Voluntary Informed Consent

One of the non-invasive methods for treating discoloration of hard tooth tissues is teeth whitening. The aim of this work is to assess the dynamics of changes in the acid resistance of enamel and hard tissues of teeth and the rate of its remineralization after the procedure of office teeth whitening. The study involved 123 patients aged 18 to 35 years with discoloration of various origins, with the color of hard tooth tissues on the Vita Classic A2 scale and darker. Before performing the office, teeth whitening procedure, all patients gave their written voluntary informed consent to participate in this study, as well as consent to the processing of personal data. Depending on the chosen method of office teeth whitening, patients were divided into 3 groups. The resistance of hard tooth tissues was judged based on the determination of TOER and CASRE tests. These indicators were determined at various times (5 days before the office teeth whitening procedure, 5 days after it, after 14, 30 days and 6 months). Regardless of the chosen whitening system, the office teeth whitening procedure is accompanied by a decrease in the enamel's resistance to acids and a decrease in the rate of its remineralization. The remineralizing function of oral fluid promotes the positive dynamics of the studied parameters after 14 days and after 30 days values increased due to the appointment of remineralizing therapy to all patients in 2 weeks after the teeth whitening procedure. After 6 months, all patients had high enamel resistance and the rate of its remineralization.

Ethics in Social Research

2018 ◽  
Author(s):  
Steve Bruce
Keyword(s):  
Informed Consent ◽  
Data Collection ◽  
Research Ethics ◽  
Social Research ◽  
Medical Interventions ◽  
Ethical Implications ◽  
Social Researcher ◽  
Naturally Occurring ◽  
The Social ◽  
Collection Phase

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.

scholarly journals Nursing Faculties’ Knowledge of and Attitudes Toward Research Ethics According to Demographic Characteristics and Institutional Environment in Korea

SAGE Open ◽  
2020 ◽  
Vol 10 (1) ◽  
pp. 215824402091454
Author(s):  
Sukhee Ahn ◽  
Geum Hee Jeong ◽  
Hye Sook Shin ◽  
Jeung-Im Kim ◽  
Yunmi Kim ◽  
...  
Keyword(s):  
Informed Consent ◽  
Research Ethics ◽  
Nursing Faculty ◽  
Institutional Environment ◽  
Conflicts Of Interest ◽  
Training Needs ◽  
Faculty Members ◽  
Intensive Training ◽  
The Republic ◽  
Difficulty Index

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.

DISORDERS OF PERIPHERAL CIRCULATION AMID CHRONIC OSTEOCHONDROSIS OF THE LUMBAR SPINE

Vestnik ◽  
2021 ◽  
pp. 24-28
Author(s):  
Р.С. Бегимбетова ◽  
Н.О. Бейсембинова ◽  
А.К. Кадырали ◽  
Г.М. Жолдасова ◽  
А. Бауржанкызы ◽  
...  
Keyword(s):  
Lumbar Spine ◽  
Informed Consent ◽  
Clinical Symptoms ◽  
Personal Data ◽  
Pain Syndrome ◽  
Peripheral Circulation ◽  
Research Protocol ◽  
Initial Visit ◽  
Continue Research ◽  
Inhibitory Reflex

Проведен анализ состояния периферического кровообращения у 28 мужчин, больных остеохондрозом поясничного отдела позвоночника, сопровождающегося люмбалгией с клинической симптоматикой нарушения периферического кровообращения нижних конечностей. Все больные, принимавшие участие в нашем исследовании, подписали информированное согласие на участие в программе и соглашение о неразглашении личных данных и протокола исследований. Критериями для анализа являлись изменения клинической симптоматики остеохондроза поясничного отдела позвоночника, обусловленной им люмбалгии и показателей оксиметрического исследования, которые были зафиксированы при первичном обращении и через 7 суток на фоне проводимого лечения и регрессии болевого синдрома. Таким образом, полученные результаты свидетельствовали о рефлекторном нарушении периферического кровообращения за счет развития патологического спинально-вазального тормозного рефлекса, обусловленного люмбалгией, которые восстанавливаются на фоне регрессии патологической импульсации в поясничном отделе позвоночника. Целесообразно продолжить исследования в этом направлении. The state of peripheral circulation in 28 men were analyzed, patients with osteochondrosis of the lumbar spine, accompanied by lumbodynia with clinical symptoms of impaired peripheral circulation of the lower extremities was carried out. All patients who took part in our study signed an informed consent to participate in the program and a non-disclosure agreement of personal data and research protocol. The criteria for the analysis were clinical symptoms of osteochondrosis of the lumbar spine caused by lumbodynia and indicators of oximetry studies, which were recorded during the initial visit and after 7 days amid treatment and regression of pain syndrome. Thus, the results indicated a reflex disorder of the peripheral circulation due to the development of a pathological spinal-vasal inhibitory reflex caused by lumbodynia, which is restored amid regression of pathological impulses in the lumbar spine. It is advisable to continue research in this direction.

scholarly journals Ethics Review Concerns of Canada's Distance Researchers

2011 ◽  
pp. 230-248
Author(s):  
Patrick J. Fahy
Keyword(s):  
Informed Consent ◽  
Research Ethics ◽  
Human Dignity ◽  
Developing Nations ◽  
Policy Statement ◽  
Ethics Review ◽  
Privacy And Confidentiality

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.

scholarly journals Communicating on the Worldwide Web – Dental Practice Websites

2015 ◽  
Vol 6 (2) ◽  
pp. 90-95
Author(s):  
Nigel Knott
Keyword(s):  
Informed Consent ◽  
News Media ◽  
Personal Data ◽  
The Internet ◽  
Dental Practice ◽  
Electronic Communications ◽  
Worldwide Web ◽  
Dental Practices

The news media are presently filled with headline stories concerning the security of electronic communications and the internet. The Financial Times’ weekend supplement FT Money devoted three pages under the title ‘Hack attack’ and asked whether companies are doing enough to protect data online. 1 Substitute dental practices for companies and we have an unhappy picture of the reasons why so much sensitive personal data is going missing or being accessed without properly informed consent.

Sign in / Sign up

Export Citation Format

Share Document