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  1. "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"/

  2. "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"/

  3. ”More than just bones?” Minutes from the Open Seminar

    research on human remains have been developed in recent years. He informed about Guidance for the Care of Human Remains in Museums (2005) ... remains, several issues are raised, such as, to what extent consent from the descendant should be obtained, and who to include

    /News/News archive/”More than just bones?” Minutes from the Open Seminar/

  4. 1. Public or private?

    open forums freely without obtaining consent from the parties covered by the information (point 8). This must always be balanced ... between the private and the public arenas in relation to information about behaviour that is disseminated and stored on the Internet

    /Ethical guidelines for research/Ethical Guidelines for Internet Research/1. Public or private?/

  5. 2. Free and informed consent

    2. Free and informed consent According to the NESH's Guidelines, research projects that include persons must generally only ... only be initiated after securing the subjects' free and informed consent (point 9). In other words, researchers must weigh relevant

    /Ethical guidelines for research/Ethical Guidelines for Internet Research/2. Free and informed consent/

  6. 3. Children's right to protection

    Children's right to protection Children and youths are valuable informants, and are entitled to be heard, also in the context of research ... does nothing to diminish the requirement to obtain parental consent for children's participation in research, even though this

    /Ethical guidelines for research/Ethical Guidelines for Internet Research/3. Children's right to protection/

  7. 4. Personal data, confidentiality and anonymity

    NESH's Guidelines stipulate that researchers must treat all information about private matters confidentially. The material must usually ... that the information is protected. In such situations, people may be willing to volunteer personal and sensitive information in an

    /Ethical guidelines for research/Ethical Guidelines for Internet Research/4. Personal data, confidentiality and anonymity/

  8. About NEM

    About NEM The Committee has 12 members with different professional backgrounds. Traditionally, the committee has been ... 2005: guidelines for research on persons with impaired informed consent capacity 2004: report on the ethical aspects of population

    /Our work/About us/The National Committee for Medical and Health Research Ethics (NEM)/About NEM/

  9. About NESH

    evaluate include how best to ensure that consent is freely given and whether children can consent by themselves to take part in research ... sources,the researchers’ duty of confidentiality and the duty to inform about planned criminal acts. In addition to giving advice in

    /Our work/About us/The National Committee for Research Ethics in the Social Sciences and the Humanities (NESH)/About NESH/

  10. 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/

  11. 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/

  12. 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/

  13. 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/

  14. 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/

  15. 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/

  16. 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/

  17. 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/

  18. 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/

  19. 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/

  20. 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/

  21. 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

    /Ethical guidelines for research/Medical and health research/Declaration of Helsinki/

  22. 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/

  23. 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)/

  24. 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/

  25. 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/

  26. 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/

  27. 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/

  28. 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)/

  29. 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/

  30. 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/

  31. General guidelines for research ethics

    PRINCIPLES Respect. People who participate in research, as informants or otherwise, shall be treated with respect. Good consequences ... material. 4. Voluntary informed consent Consent is the main rule in research on individuals or on information and material that can

    /Ethical guidelines for research/General guidelines for research ethics/

  32. Guide to filling in the form 'Skjema for etisk vurdering ved forskning på menneskelige levninger'

    administrative authorities will want to have all relevant information available before they submit their recommendations and make ... ethics (REK). (See http://helseforskning.etikkom.no for more information.) It is up to the National Committee for Medical and Health

    /Our work/About us/The National Committee for Research Ethics on Human Remains/Ask The National Committee for Research Ethics on Human Remains for advice/Guide to filling in the form 'Skjema for etisk vurdering ved forskning på menneskelige levninger'/

  33. Guidelines drawn up by The Norwegian National Research Ethics Committee for medical and health research (NEM)

    Guidelines drawn up by The Norwegian National Research Ethics Committee for medical and health research (NEM) The ... Norwegian Guidelines for research on persons with impaired informed consent capacity (2005) - - In Norwegian Guidelines for ethical

    /Ethical guidelines for research/Medical and health research/Guidelines drawn up by The Norwegian National Research Ethics Committee for medical and health research (NEM)/

  34. 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/

  35. 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/

  36. 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/

  37. 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/

  38. 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/

  39. 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/

  40. 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)/

  41. Medicine and healthcare

    All health data is considered sensitive, except anonymous information, which may be used without prior approval.. Research on embryos ... risk-benefit assessments, satisfactory informed consent and an assessment of the suitability of informants/subjects pursuant to the principle

    /The Research Ethics Library/Introduction/An introduction to research ethics/Medicine and healthcare/

  42. New anthology: Internet research ethics

    discussed in the book are the following: When is voluntary consent from research subjects required in using the Internet as a ... academic publisher (Cappelen Damm Akademisk). Articles: Consent and information – ethical considerations when conducting research on

    /News/News archive/2016/New anthology: Internet research ethics/

  43. Norwegian research gets its Code of ethics

    implies that individuals who participate in research, as informants or otherwise, should be treated with respect. Researchers ... participants and society as a whole. Consent is the main rule in research on individuals or on information and material that can be linked

    /News/News archive/Norwegian research gets its Code of ethics/

  44. 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/

  45. 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/

  46. 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/

  47. 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/

  48. 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/

  49. 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/

  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/