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  1. EU has become stricter: Researcher wrote eight pages on ethics – waited six months for the money

    involves ethnographic field studies. "I got questions about the consent form, about what to do when interviewing children, if I were ... carefully the methods of the project and how to protect our informants," says the researcher. Stricter since 2018 A few weeks later

    /News/News archive/2019/EU has become stricter: Researcher wrote eight pages on ethics – waited six months for the money/

  2. "Don’t let transparency damage science"

    is collected from. "You have a way of codifying biological information in repository databases that you can then use in data models ... collected for specified, explicit and legitimate purposes, and a consent for use must also be specific. • Data minimization: the collection

    /News/News archive/2018/"Don’t let transparency damage science"/

  3. Human biological material, full genome sequencing and the right of reservation

    left, Per was informed that the biological material he had provided could be used in research without his consent on approval by ... not want the blood sample to be used in research without his consent. Three years later Doctor Lise suspects that the heart attack

    /The Research Ethics Library/Resources/Case studies/Human biological material, full genome sequencing and the right of reservation/

  4. Vulnerable groups

    Vulnerable groups [The following text is an example or case, which can serve as a basis for reflection and discussion. Some examples may be based on real ... portrayal she reacts to? Should the researcher have obtained informed consent from the author?

    /The Research Ethics Library/Resources/Case studies/Vulnerable groups/

  5. Experiences of violence among children in the care of the Norwegian Child Welfare Service

    contend that the results will provide extremely important information, which can help to improve children's living situation in ... of individual institutions. The children will receive an information letter describing in simple terms what the study will be

    /The Research Ethics Library/Resources/Case studies/Experiences of violence among children in the care of the Norwegian Child Welfare Service/

  6. Informed consent

    Informed consent [The following text is an example or case, which can serve as a basis for reflection and discussion. Some examples ... Prior to the interviews, the researcher will obtain consent from the informants or their parents/guardians. What follow-up routines

    /The Research Ethics Library/Resources/Case studies/Informed consent/

  7. What is the extent of the researcher’s responsibility?

    Oslo area and was based on the narratives of two groups of informants. One group comprised health care personnel who had been in ... experiences of the latter group. It was difficult to find informants among the immigrants. However, the Centre for Migration and

    /The Research Ethics Library/Resources/Case studies/What is the extent of the researcher’s responsibility?/

  8. C) Respect for groups and institutions

    companies, interest organisations etc. may have for not wanting information about themselves, their members or their plans to be published ... obligation to provide information except where specific statutory provisions apply to certain types of information. Such institutions

    /Ethical guidelines for research/Guidelines for Research Ethics in the Social Sciences, Humanities, Law and Theology/C) Respect for groups and institutions/

  9. B) Respect for individuals

    by the research. 7 Duty to inform Researchers must provide participants with adequate information about the field of research ... who has funded the project, who will receive access to the information, the intended use of the results, and the consequences of

    /Ethical guidelines for research/Guidelines for Research Ethics in the Social Sciences, Humanities, Law and Theology/B) Respect for individuals/

  10. Introduction

    is to provide researchers and the research community with information about recognised norms of research ethics. The guidelines ... tasks, for example systematic acquisition and processing of information about persons, groups or organisations in order to develop

    /Ethical guidelines for research/Guidelines for Research Ethics in the Social Sciences, Humanities, Law and Theology/Introduction/

  11. "Extremism is a research ethics minefield"

    age of confusion, fear and frustration. Politicians want information that helps them make the right decisions. The population ... Gule asked himself whether interviews could actually yield information that was so valuable that it made up for the potential burdens

    /News/News archive/2016/"Extremism is a research ethics minefield"/

  12. Protection of research subjects

    Researchers must respect the requirement of freely given, informed consent When research involves humans as research subjects, researchers ... rule, obtain freely given, informed consent. General requirements regarding freely given, informed consent entail researchers ensuring

    /Ethical guidelines for research/Guidelines for research ethics in science and technology/Protection of research subjects/

  13. Summary

    Summary Research ethics The concept of "research ethics" refers to a broad set of standards, values, ... Researchers must respect the requirement of freely given, informed consent. 11 Researchers must protect the privacy of their research

    /Ethical guidelines for research/Guidelines for research ethics in science and technology/Summary/

  14. The Health Research Act

    medical and health research" Ethics and the law Participant consent "Ethically sound medical and health research" The purpose of ... professions. Participant consent The principal rule applying to participation in medical and health research is "informed, voluntary, express

    /The Research Ethics Library/Practical information/Legal statutes and guidelines/The Health Research Act/

  15. Dunn & Gordon (2005)

    Dunn LB, Gordon NE. “Improving informed consent and enhancing recruitment for research by understanding economic behaviour”. JAMA

    /The Research Ethics Library/Resources/Dunn & Gordon (2005)/

  16. Declaration of Helsinki

    self-determination, privacy, and confidentiality of personal information of research subjects. The responsibility for the protection ... never with the research subjects, even though they have given consent. 10. Physicians must consider the ethical, legal and regulatory

    /The Research Ethics Library/Practical information/Legal statutes and guidelines/Declaration of Helsinki/

  17. Payment of research subjects

    participating in a project that can benefit their health, despite information to the contrary (Dickert and Grady 1999, NIH 2009). Payment ... been that payment can serve as 'undue influence' during the information process or result in an 'obligation to deliver'. This can

    /The Research Ethics Library/Topics/Data protection and responsibility concerning the individual/Payment of research subjects/

  18. Children

    key to the ethical assessments. Introduction Consent and competence to grant consent Weighing of benefit and harm associated with ... credible knowledge, in addition to having important and unique information to provide about their lives. This knowledge provides a different

    /The Research Ethics Library/Topics/Research on particular groups/Children/

  19. Forms of visual expression

    they consented to be photographed and their image perhaps to be reproduced in other media? Was the consent informed consent, have ... placed in new contexts, and even if a research subject has consented to the images being used, the context may be directly offensive

    /The Research Ethics Library/Topics/Particular problem areas/Forms of visual expression/

  20. Ethnic groups

    mind that ethnic identity is considered sensitive personal information, which is subject to special processing rules (cf. ss. 2 ... Act). It is generally more demanding to process sensitive information when dealing with small populations, and it is important

    /The Research Ethics Library/Topics/Research on particular groups/Ethnic groups/

  21. Intellectual impairment

    Introductory figures Voluntary informed consent The voluntary aspect Informedness Consent Anonymization Method-specific ethical ... considerably lower than the actual prevalence. Voluntary informed consent One of the conditions for including someone in a research

    /The Research Ethics Library/Topics/Research on particular groups/Intellectual impairment/

  22. Human biological material

    disposition to a particular disease, and if such sensitive information is not handled properly and in accordance with the rules ... applies even if the person from whom the material stems gives consent to its release, the intention being to prevent persons in vulnerable

    /The Research Ethics Library/Topics/Research on human biological material/Human biological material/

  23. Biometrics

    be used in a wide range of areas: in the health service, information systems, the transport sector and the workplace, for logging ... challenges in research Digitisation incorporates the body in the information network: individuality and subjectivity become digital objects

    /The Research Ethics Library/Topics/The research/societal relationship/Biometrics/

  24. Persons with limited life expectancy

    Burden on the participants Risk versus benefit Capacity to consent Confidentiality and anonymity Pragmatic definition For pragmatic ... patients in Norway who have a limited life expectancy have been informed that the disease is no longer curable, but we have no empirical

    /The Research Ethics Library/Topics/Research on particular groups/Persons with limited life expectancy/

  25. Prisoners

    research lies in the possibilities for obtaining freely given informed consent to participate from people whose freedom is restricted ... subject to more stringent requirements in order to ensure that consent is voluntary since there may be uncertainty about whether the

    /The Research Ethics Library/Topics/Research on particular groups/Prisoners/

  26. The Nagoya Protocol

    access to such resources. This means, among others, that informed consent or approval and involvement must be procured from the indigenous ... communities within the territory of a party is accessed with the informed consent or approval and involvement of these indigenous and local

    /The Research Ethics Library/Practical information/Legal statutes and guidelines/The Nagoya Protocol/

  27. Biotechnology and gene technology

    should be made with regard to the scope and content of informed consent in connection with xenotransplantation (particularly since ... withdraw from infection monitoring?) The requirement of informed consent, which is fundamental with respect to medical interventions

    /The Research Ethics Library/Topics/Research and environment/Biotechnology and gene technology/

  28. Internet users and Internet research

    may concern activities such as the publishing or sharing of information, social interactions or conflicts, genre or product development ... harming anyone and observe the requirements of freely given informed consent and of confidentiality where relevant. At the same time

    /The Research Ethics Library/Topics/Research on particular groups/Internet users and Internet research/

  29. Deception research

    Deception in research entails that participants are not fully informed of the purpose of the study. Valuable insight can also be obtained ... participation in studies where those taking part are not informed of what the researchers are actually studying may have serious

    /The Research Ethics Library/Introduction/Methods and approaches/Deception research/

  30. Quantitative methods

    analysis is undertaken quantitatively. In this case, the information in the essays will be quantified and prepared for statistical ... detailed insight into the opinions and experiences of the informants. It is an essential requirement for researchers to have fundamental

    /The Research Ethics Library/Introduction/Methods and approaches/Quantitative methods/

  31. Kho, ME, et al (2009)

    Kho ME; Duffett M, Willision DJ, Brouwers MC. Written informed consent and selection bias in observational studies using medical

    /The Research Ethics Library/Resources/Kho, ME, et al (2009)/

  32. Bias

    studies (observational studies) that are based on the patients' consent to access to their medical records (Kho ME et al. 2009), a ... common research ethics requirement for use of confidential information collected by the health services. Kho et al. argue that researchers

    /The Research Ethics Library/Topics/Particular problem areas/Bias/

  33. Protection of privacy

    Protection of privacy Information about persons who take part in research projects shall have an "adequate level of protection" ... of the data Fundamental principles Personal data and consent Information security The nature of the data The need for protection

    /The Research Ethics Library/Topics/Data protection and responsibility concerning the individual/Protection of privacy/

  34. Vulnerable groups

    the group may have special difficulty giving free and informed consent to being the subjects of research. Introduction Vulnerability ... Declaration of Helsinki (2009) Subjects unable to give informed consent Subjects receptive to coercion or undue influence Populations

    /The Research Ethics Library/Topics/Research on particular groups/Vulnerable groups/

  35. Faden et al (1996)

    Faden et al (1996) Faden, R.R., T.L. Beuchamp & N.M.P. King (1986). A history and theory of informed consent. New York: Oxford University ... Beuchamp & N.M.P. King (1986). A history and theory of informed consent. New York: Oxford University Press

    /The Research Ethics Library/Resources/Faden et al (1996)/

  36. The history of research ethics

    physicians also serve as subjects (Article 5). The voluntary consent of the human subject is absolutely essential (Article 1). [ ... been a particular result of the use of sensitive personal information. On the basis of research projects, objections have been

    /The Research Ethics Library/Introduction/Systhematic and historical perspectives/The history of research ethics/

  37. Biography

    How far should the biographer accommodate the requirement of consent from the subject of the biography or their next of kin? An ... purpose served by including private life or compromising information. Will focusing on these themes give a wider picture and increased

    /The Research Ethics Library/Introduction/Methods and approaches/Biography/

  38. Clinical trials

    the participants include patients with a reduced capacity to consent. Funding of clinical trials The pharmaceutical industry is ... are properly conducted, it is a requirement that the patients consent to both the pharmaceutical firm and the regulatory authorities

    /The Research Ethics Library/Introduction/Methods and approaches/Clinical trials/

  39. Consent

    Consent Freely given informed consent is regarded as one of the most central requirements for research on humans where the research ... express permission. The requirement that the consent be freely given and informed means that the subjects must not be under any

    /The Research Ethics Library/Topics/Data protection and responsibility concerning the individual/Consent/

  40. Confidentiality

    Confidentiality Confidentiality means that information is restricted to those authorised to have access to it. Access restriction ... normally increases with the degree of sensitivity of the information, and with the degree of vulnerability of the research subject

    /The Research Ethics Library/Topics/Data protection and responsibility concerning the individual/Confidentiality/

  41. Duty of secrecy

    two different contexts. First, these issues will arise when information has to be obtained from sources that are themselves subject ... about researchers' duty to preserve secrecy about certain information received from research subjects. It is largely the problems

    /The Research Ethics Library/Topics/Data protection and responsibility concerning the individual/Duty of secrecy/

  42. Responsibility concerning the individual

    researcher and the research subject How voluntary and how informed? Anonymisation as protection or invalidation? The researcher's ... expressed in how voluntary informed consent is administered. This concerns such issues as who gives consent, how it is given, whether

    /The Research Ethics Library/Topics/Data protection and responsibility concerning the individual/Responsibility concerning the individual/

  43. Questionnaire surveys

    individual anonymity Group-related indiscretion Informed consent Burden on informants – alternative data sources Requirement for relevance ... questions should be formulated to provide the most valid information possible about the facts at issue, and how the responses

    /The Research Ethics Library/Introduction/Methods and approaches/Questionnaire surveys/

  44. Storosum et al (2002)

    Storosum et al (2002) Storosum, J., van Zwieten, B. & de Haan, L. (2002). Informed consent from behaviourally ... (2002) Storosum, J., van Zwieten, B. & de Haan, L. (2002). Informed consent from behaviourally disturbed patients. The Lancet 359(9300)

    /The Research Ethics Library/Resources/Storosum et al (2002)/

  45. Persons with mental disorders

    researcher's capacity for self-reflexivity is crucial. Informed consent Patients' vulnerability does not necessarily mean that ... they have impaired competence or that they lack competence to consent. An acute crisis, for example with the development of psychosis

    /The Research Ethics Library/Topics/Research on particular groups/Persons with mental disorders/

  46. UNESCO’s Declaration on the Human Genome

    genome against unethical and unfair exploitation of genetic information. History In 1993, UNESCO founded the International Committee ... must people be discriminated against on the basis of genetic information. This principle naturally has implications for minorities

    /The Research Ethics Library/Practical information/Legal statutes and guidelines/UNESCO’s Declaration on the Human Genome/

  47. The Oviedo Convention

    focuses on consent, both ordinary informed consent and consent when the person does not have the capacity to consent. Chapter 3 ... 3 deals with privacy and the right to information. Themes related to the human genome can be found in chapter 4. Research is specifically

    /The Research Ethics Library/Practical information/Legal statutes and guidelines/The Oviedo Convention/

  48. The politics of research ethics

    submitted adequate declarations of all this. However, the information leaflet to be given to the participants is written in English ... proposes that the project be approved, provided that the information leaflet be revised and assessed on the authority of REK's

    /The Research Ethics Library/Topics/The research/societal relationship/The politics of research ethics/

  49. Feeding back the findings

    significant and altruistic contributions. The projects will obtain information that may be of interest and importance to these participants ... made clear to them, before they gave their prior consent, that they will be informed of the findings. The examples below are taken

    /The Research Ethics Library/Topics/The research/societal relationship/Feeding back the findings/

  50. Qualitative methods

    to certain ethical principles, such as confidentiality, informed consent and safeguarding the research subjects' integrity. (See ... to treat sensitive information with discretion. In surveys that deal with sensitive issues, written consent is often required.

    /The Research Ethics Library/Introduction/Methods and approaches/Qualitative methods/