WEBVTT Kind: captions; language: en-us NOTE Treffsikkerhet: 89% (HØY) 00:00:00.600 --> 00:00:09.200 Hi. In this lecture. I will try to give an overview of different systems and institutions that are 00:00:09.200 --> 00:00:18.300 relevant to you when you are to conduct research in an ethically sound manner. Therefore, my focus 00:00:18.300 --> 00:00:26.900 will be on the systems that will ensure ethically sound research instead of discussing ethical 00:00:26.900 --> 00:00:28.900 dilemmas. NOTE Treffsikkerhet: 82% (HØY) 00:00:30.500 --> 00:00:39.500 For both new and more experienced researcher, research ethics can appear confusing. It can be 00:00:39.500 --> 00:00:47.100 difficult to find out what the current rules are and who to connect with when you need to know more. 00:00:47.100 --> 00:00:56.200 First, we have ethical theories. That constitute a tool for reflection. Sometimes the systems around 00:00:56.200 --> 00:01:01.250 us cannot provide sufficient answer and we ourselves have NOTE Treffsikkerhet: 70% (MEDIUM) 00:01:01.250 --> 00:01:12.400 to take stand and to take into account both impact assessment and our own ethical beliefs. We do 00:01:12.400 --> 00:01:21.300 also have professional conventions that are what the research community considered to be good 00:01:21.300 --> 00:01:24.100 and accepted practice. NOTE Treffsikkerhet: 82% (HØY) 00:01:24.900 --> 00:01:34.300 We also have a set of laws which do not necessarily provide rules for how researchers should 00:01:34.300 --> 00:01:43.400 behave in an individual situation. But which intend to regulate how control systems and various 00:01:43.400 --> 00:01:54.500 institution should be organized. The law can also be international. For example in 2016 NOTE Treffsikkerhet: 90% (HØY) 00:01:54.500 --> 00:02:03.700 European Union approved the general data protection regulation, which applies to collection, 00:02:03.700 --> 00:02:13.100 processing and storage of personal data. In 2018 this law became an integrated part of the 00:02:13.100 --> 00:02:16.600 Norwegian personal data act. NOTE Treffsikkerhet: 85% (HØY) 00:02:16.600 --> 00:02:25.900 Further, we do have ethical guidelines for research that provide detailed advice and 00:02:25.900 --> 00:02:34.600 guidance on how researchers should act. The Norwegian guidelines are intended to be advisory and 00:02:34.600 --> 00:02:42.900 preventive. In this lecture I would spend most of the time looking at these guidelines, because the 00:02:42.900 --> 00:02:47.000 Norwegian legislations leave much of the responsibility NOTE Treffsikkerhet: 85% (HØY) 00:02:47.000 --> 00:02:56.100 for ethical research practice to the institutions. For example to the University's. The various 00:02:56.100 --> 00:03:04.600 institutions have a number of rules for a reason for research practice, which also include ethical 00:03:04.600 --> 00:03:13.500 aspects of the research. Last but not least, there are public institutions such as the Norwegian 00:03:13.500 --> 00:03:16.950 data protection authority, that provide NOTE Treffsikkerhet: 83% (HØY) 00:03:16.950 --> 00:03:25.600 in-depth advice, and guidance concerning privacy issues and also have the function of 00:03:25.600 --> 00:03:30.000 an appeal body in privacy cases. NOTE Treffsikkerhet: 91% (HØY) 00:03:32.200 --> 00:03:41.800 So what does the Norwegian law of research ethics say? There is only one paragraph that say 00:03:41.800 --> 00:03:50.100 something directly about the researchers behavior, and that is the following. Researchers must act 00:03:50.100 --> 00:03:58.000 with care to ensure that all research takes place in accordance with recognized research ethics 00:03:58.000 --> 00:04:02.150 norms. This also applies during NOTE Treffsikkerhet: 88% (HØY) 00:04:02.150 --> 00:04:11.750 preparation for research, reporting on research and other research related activities. Further, the law 00:04:11.750 --> 00:04:20.600 imposes the institution, for example the university, the responsibility for maintaining 00:04:20.600 --> 00:04:28.400 good research ethics. The institutions are responsible for making rules for their own institution 00:04:28.400 --> 00:04:32.350 and having an investigation committee NOTE Treffsikkerhet: 63% (MEDIUM) 00:04:32.350 --> 00:04:39.300 that can investigate and make judgment if the rules are violated. NOTE Treffsikkerhet: 74% (MEDIUM) 00:04:39.300 --> 00:04:48.200 The act also ruled that there shall be a national investigation committee, which shall provide a more 00:04:48.200 --> 00:04:57.400 principled advice, and recommendation and be able to deal with more complex issues and cases. The 00:04:57.400 --> 00:05:06.400 law also regulate the establishment of the national committee's for research ethics. 00:05:06.400 --> 00:05:08.900 These committees draws up NOTE Treffsikkerhet: 76% (HØY) 00:05:08.900 --> 00:05:17.300 guidelines for different disciplines and different context. There are several set of 00:05:17.300 --> 00:05:26.000 guidelines for research ethics that are adapted to different disciplines and context. Moreover, the 00:05:26.000 --> 00:05:34.500 guidelines are further developed in relation to the development of the society. For example, we have 00:05:34.500 --> 00:05:38.850 recently received a separate guideline for NOTE Treffsikkerhet: 73% (MEDIUM) 00:05:38.850 --> 00:05:40.800 internet research. NOTE Treffsikkerhet: 86% (HØY) 00:05:40.800 --> 00:05:49.850 Then the law says something about the establishment of the regional committees for medical and health 00:05:49.850 --> 00:05:58.700 research ethics. If we are to carry out research project that involves collecting health information 00:05:58.700 --> 00:06:08.100 about people, then the research project must be approved by a regional ethical committee. In 00:06:08.100 --> 00:06:11.100 addition, there are several other laws NOTE Treffsikkerhet: 81% (HØY) 00:06:11.100 --> 00:06:20.200 that are relevant to research ethics. The most important are the health research act and the 00:06:20.200 --> 00:06:29.400 personal data act. I will come back to the latter law and its regulation later in the lecture. 00:06:29.400 --> 00:06:38.900 Now, I would look closer into the guidelines for research ethics in social science, humanities, law 00:06:38.900 --> 00:06:40.750 and theology. NOTE Treffsikkerhet: 85% (HØY) 00:06:40.750 --> 00:06:50.700 This is the most relevant guideline for research on topics in special Needs education. NOTE Treffsikkerhet: 91% (HØY) 00:06:52.900 --> 00:07:00.600 Hopefully some of you have already had a look at this document. In addition to a general 00:07:00.600 --> 00:07:09.900 introduction, the guideline contains of six chapters, which each deal with different aspects of the 00:07:09.900 --> 00:07:12.500 research activity. NOTE Treffsikkerhet: 87% (HØY) 00:07:14.000 --> 00:07:23.200 I will now present selected paragraphs that I think are especially important for you to be aware of. 00:07:23.200 --> 00:07:31.650 I begin with the introduction. First of all, the purpose of the guidelines is to provide researcher 00:07:31.650 --> 00:07:40.200 and the research community with information about recognized norms of research 00:07:40.200 --> 00:07:44.650 ethics. The guidelines provides guidance and NOTE Treffsikkerhet: 88% (HØY) 00:07:44.650 --> 00:07:54.500 advice. They are intended to help develop ethical discretion, and reflection to clarify ethical 00:07:54.500 --> 00:08:00.900 dilemmas and to promote good scientific practice. NOTE Treffsikkerhet: 91% (HØY) 00:08:00.900 --> 00:08:07.600 They are also intended to prevent scientific misconduct. NOTE Treffsikkerhet: 91% (HØY) 00:08:07.600 --> 00:08:18.500 Then it states what research ethics is about. It refers to a wide variety of values, norms and 00:08:18.500 --> 00:08:28.800 institutional arrangements that help constitute and regulate scientific activities. Research 00:08:28.800 --> 00:08:38.000 ethics is a codification of scientific morality in practice. Guidelines for research NOTE Treffsikkerhet: 90% (HØY) 00:08:38.000 --> 00:08:40.650 ethics specifies NOTE Treffsikkerhet: 90% (HØY) 00:08:40.650 --> 00:08:49.600 the basic norms and values of the research community. They are based on general ethics of 00:08:49.600 --> 00:08:59.750 science, just as general ethics is based on morality of the society at large. Moreover, the 00:08:59.750 --> 00:09:08.700 introduction say something about the relation between guidelines and legislation. The guidelines 00:09:08.700 --> 00:09:11.200 for research ethics do not serve NOTE Treffsikkerhet: 87% (HØY) 00:09:11.200 --> 00:09:20.400 the same role or function as legislation. The guidelines primarily serve as a tool for 00:09:20.400 --> 00:09:30.000 researcher and the research community. They identify relevant factors that researchers should take 00:09:30.000 --> 00:09:39.350 into account, while acknowledging that researcher often have to wigh such factors against each other, 00:09:39.350 --> 00:09:41.050 as well as NOTE Treffsikkerhet: 81% (HØY) 00:09:41.050 --> 00:09:45.900 against other requirements and obligations. NOTE Treffsikkerhet: 77% (HØY) 00:09:47.000 --> 00:09:56.300 After A concerns, the relation between the research, the society and ethics, inform the paragraphs 00:09:56.300 --> 00:10:05.500 are normative. It means that they give recommendation for how researcher or the 00:10:05.500 --> 00:10:14.000 institutions should act. The first paragraph is a very general and states that the 00:10:14.000 --> 00:10:17.349 researcher are obligated to comply with NOTE Treffsikkerhet: 84% (HØY) 00:10:17.349 --> 00:10:26.100 recognized norms of research ethics. The second paragraph concerned the freedom or research. It says 00:10:26.100 --> 00:10:35.200 that both researcher and the research institution are responsible for preserving the freedom and 00:10:35.200 --> 00:10:43.850 independence of research, especially when the topic is controversial or when a strategic or 00:10:43.850 --> 00:10:47.250 commercial considerations impose NOTE Treffsikkerhet: 91% (HØY) 00:10:47.250 --> 00:10:57.200 pressure and constraints on research. Freedom and independence are however related to 00:10:57.200 --> 00:11:07.100 responsibility and paragraph three states that responsible research requires freedom from 00:11:07.100 --> 00:11:16.400 control and constraints, while trust in research requires the exercise of responsibility by 00:11:16.400 --> 00:11:17.200 both NOTE Treffsikkerhet: 91% (HØY) 00:11:17.200 --> 00:11:27.200 researchers and the research institutions. Moreover, the research institution must guarantee that 00:11:27.200 --> 00:11:35.349 research is good and responsible, by preventing misconduct and by promoting the guidelines for 00:11:35.349 --> 00:11:37.800 research ethics. NOTE Treffsikkerhet: 83% (HØY) 00:11:39.500 --> 00:11:49.700 Chapter B concerns how research should treat individuals and the research subjects. Paragraph five 00:11:49.700 --> 00:11:59.800 states that researcher must base their work on fundamental respect for human dignity. Paragraph 7 00:11:59.800 --> 00:12:08.800 concerns the duty to inform participants with adequate information about the field of research, 00:12:08.800 --> 00:12:10.050 the purpose of NOTE Treffsikkerhet: 89% (HØY) 00:12:10.050 --> 00:12:18.100 the research, who has funded the research, who will receive access to the information, the 00:12:18.100 --> 00:12:25.849 intended use of the results, and the consequences of participation in the research project. 00:12:25.849 --> 00:12:34.850 Paragraph 8 concerns the requirement of consent when the research deals with personal data. 00:12:34.850 --> 00:12:39.950 Researchers are obliged to inform NOTE Treffsikkerhet: 82% (HØY) 00:12:39.950 --> 00:12:49.099 participants or subjects of research and to obtain their consent. The consent must be freely given, 00:12:49.099 --> 00:12:59.500 informed and in explicit form. Individuals unable to give free and informed consent will generally 00:12:59.500 --> 00:13:09.700 only be included in research when it cannot be conducted on individuals who are able to give consent 00:13:09.700 --> 00:13:10.400 and NOTE Treffsikkerhet: 80% (HØY) 00:13:10.400 --> 00:13:23.400 it can be shown to be probable that research in question is a direct or substantial 00:13:23.400 --> 00:13:30.800 benefit to the individuals or the group being studied. NOTE Treffsikkerhet: 77% (HØY) 00:13:33.100 --> 00:13:42.000 I have also picked out paragraph 9 and 11 for my selection. Paragraph nine concerns 00:13:42.000 --> 00:13:50.600 confidentiality. Generally, researcher must process data acquired about personal matters 00:13:50.600 --> 00:14:00.000 confidentiality. Personal data must normally be de-identified, while publication and 00:14:00.000 --> 00:14:03.800 dissemination of research material must normally NOTE Treffsikkerhet: 66% (MEDIUM) 00:14:03.800 --> 00:14:06.300 be anonymized. NOTE Treffsikkerhet: 72% (MEDIUM) 00:14:06.300 --> 00:14:16.100 In certain situation, researcher must nonetheless balanced confidentiality and 00:14:16.100 --> 00:14:27.100 the obligation to notify. Paragraph nine states that the data that can identify individuals must 00:14:27.100 --> 00:14:36.350 be stored responsibly. Such data must not be stored any longer than what is necessary to achieve NOTE Treffsikkerhet: 91% (HØY) 00:14:36.350 --> 00:14:40.700 the objective for which it was collected. NOTE Treffsikkerhet: 76% (HØY) 00:14:41.600 --> 00:14:49.600 And to a paragraph that is specially important for us who are working with children and young people. 00:14:49.600 --> 00:14:58.400 Paragraph 14 concerns protection of children. Childrena and adolescents who take part in research 00:14:58.400 --> 00:15:05.900 are particularly entitled to protection. Children are often more willing to obey authority than 00:15:05.900 --> 00:15:12.300 adults, and they often feel that they cannot object. Nor are NOTE Treffsikkerhet: 89% (HØY) 00:15:12.300 --> 00:15:21.900 they always able to see the consequences of participating in research. Children who have turned 15 00:15:21.900 --> 00:15:31.550 can consent to researchers collecting and using their personal data. If a child is under the age of 00:15:31.550 --> 00:15:40.300 15 or for other reasons not able to give concern themselves, researcher must usually obtain 00:15:40.300 --> 00:15:42.250 consent from their parents or NOTE Treffsikkerhet: 87% (HØY) 00:15:42.250 --> 00:15:53.150 guardians. For consent to collect and process sensitive data, for example health related 00:15:53.150 --> 00:16:01.400 information, the data protection authority recommends that the children have turned 16 or sometimes 00:16:01.400 --> 00:16:11.200 18, dependent on the nature of the data. The age requirement for consent is determined by 00:16:11.200 --> 00:16:12.300 convention. NOTE Treffsikkerhet: 91% (HØY) 00:16:12.300 --> 00:16:18.300 It is not explicitly mention in any law. NOTE Treffsikkerhet: 87% (HØY) 00:16:18.600 --> 00:16:27.200 Chapter C, which concerns respect for groups and institution. Here I have picked out 00:16:27.200 --> 00:16:34.900 two paragraphs that I think it is important for you to be aware of. It is the paragraph 19, which 00:16:34.900 --> 00:16:43.750 concern research on vulnerable groups and paragraph 23 which concerns research on other cultures. 00:16:43.750 --> 00:16:49.700 Researchers have a special responsibility to respect NOTE Treffsikkerhet: 91% (HØY) 00:16:49.700 --> 00:16:57.600 the interest of vulnerable groups throughout the entire research process. Vulnerable and 00:16:57.600 --> 00:17:05.700 disadvantaged individuals and groups are not always equipped to defend their interest when dealing 00:17:05.700 --> 00:17:15.849 with researchers. Accordingly, researcher cannot take for granted that ordinary procedures for 00:17:15.849 --> 00:17:19.250 eliciting information and consent will NOTE Treffsikkerhet: 91% (HØY) 00:17:19.250 --> 00:17:29.300 ensure individuals self-determination or protect them from unreasonable strain. Paragraph 23 00:17:29.300 --> 00:17:37.800 concern research on other cultures. When conducting research on other culture it is important to 00:17:37.800 --> 00:17:46.500 have knowledge of local traditions, traditional knowledge and social matters. As far as 00:17:46.500 --> 00:17:49.300 possible, researcher should enter NOTE Treffsikkerhet: 77% (HØY) 00:17:49.300 --> 00:17:59.950 into a dialogue with the local inhabitants, representatives of the culture in question and the local 00:17:59.950 --> 00:18:02.000 authorities. NOTE Treffsikkerhet: 86% (HØY) 00:18:03.200 --> 00:18:10.300 The guidelines do also contain a chapter about the more internal matters in the research 00:18:10.300 --> 00:18:17.900 community. For example, paragraph 25 says something about the requirements for being a co-author 00:18:17.900 --> 00:18:27.699 on a scientific publication. It says that researcher must observe good publication practice, 00:18:27.699 --> 00:18:33.250 respect the contributions of all the researcher and observe NOTE Treffsikkerhet: 75% (MEDIUM) 00:18:33.250 --> 00:18:41.900 recognized standards of authorship and cooperation. We do follow the recommendation of the 00:18:41.900 --> 00:18:51.600 international committee for all medical journal editors, which states four criteria for being a co-author. NOTE Treffsikkerhet: 82% (HØY) 00:18:56.100 --> 00:19:06.700 Other interesting paragraphs are 26 and 32. All researcher and student are obliged to follow Good 00:19:06.700 --> 00:19:14.600 citation practice. This is a prerequisite for critical examination and important for enabling 00:19:14.600 --> 00:19:23.900 further research. Researcher and students are under obligation to provide accurate and references to 00:19:23.900 --> 00:19:26.900 the literature they use, whether this is NOTE Treffsikkerhet: 82% (HØY) 00:19:26.900 --> 00:19:37.050 primary or secondary literature. This must be accounted for explicitly, also when re-using text from 00:19:37.050 --> 00:19:48.300 one's own publication. Paragraph 32 concerns the student-supervisor 00:19:48.300 --> 00:19:56.850 relationship. Supervisors are obliged to act in a students' best NOTE Treffsikkerhet: 72% (MEDIUM) 00:19:56.850 --> 00:20:06.500 interest and not take advantage of their dependents. This applies to academic results and personal 00:20:06.500 --> 00:20:08.400 matters. NOTE Treffsikkerhet: 83% (HØY) 00:20:09.200 --> 00:20:17.800 I have only included one paragraph from the chapter that concerns commissioned research. That is 00:20:17.800 --> 00:20:26.449 paragraph 38, which concerned transparency in research funding. Both researcher and commissioners 00:20:26.449 --> 00:20:34.800 have a duty to make it publicly known who is funding the research. Transparency concerning funding 00:20:34.800 --> 00:20:38.250 makes it easier for researcher to NOTE Treffsikkerhet: 68% (MEDIUM) 00:20:38.250 --> 00:20:47.700 protect themselves against undue pressure and thus ensure the freedom and independence of the 00:20:47.700 --> 00:20:49.600 research. NOTE Treffsikkerhet: 71% (MEDIUM) 00:20:50.600 --> 00:20:59.500 The last chapter of the guideline concerns dissemination. Researcher and research institution are 00:20:59.500 --> 00:21:07.850 obliged to disseminate scientific knowledge to a broader audience outside the research community. 00:21:07.850 --> 00:21:16.800 Finally I want to mention that researcher have a special obligation to report results back to the 00:21:16.800 --> 00:21:19.500 participants in a comprehensible NOTE Treffsikkerhet: 91% (HØY) 00:21:19.500 --> 00:21:28.750 and acceptable manner. I have now gone through selected paragraph of the guidelines for researcher 00:21:28.750 --> 00:21:37.000 ethics to illustrate the breadth of topics that are discussed. I recommend that you also look at the 00:21:37.000 --> 00:21:44.250 paragraph that I have not mentioned today. For you as a researcher it is important to be 00:21:44.250 --> 00:21:47.700 familiar with this document. NOTE Treffsikkerhet: 80% (HØY) 00:21:48.600 --> 00:21:55.600 So, what do I need to think about when planning my master's project? NOTE Treffsikkerhet: 91% (HØY) 00:21:55.600 --> 00:22:02.800 Of course, there is a lot of thing you must keep in mind. First, you should plan the research 00:22:02.800 --> 00:22:10.400 activities according to the ethical guidelines. It is also important to decide what kind of data 00:22:10.400 --> 00:22:19.300 needed to answer your research questions. Furthermore, you should ask yourself does the sample 00:22:19.300 --> 00:22:24.150 include children, adults and vulnerable people? NOTE Treffsikkerhet: 69% (MEDIUM) 00:22:24.150 --> 00:22:33.200 Does the research data contain personal information or sensitive information or can I collect data 00:22:33.200 --> 00:22:43.000 anonymous? Your answer on these questions will determine what activities are needed. To learn more 00:22:43.000 --> 00:22:52.300 about local rules and required procedures I recommend you to have a look on the University's 00:22:52.300 --> 00:22:54.000 web pages. NOTE Treffsikkerhet: 74% (MEDIUM) 00:22:54.000 --> 00:23:02.000 Furthermore, I recommend you to conduct the mandatory course in privacy protection. This is 00:23:02.000 --> 00:23:08.600 a e-learning course that is available for you in Canvas. NOTE Treffsikkerhet: 75% (MEDIUM) 00:23:10.600 --> 00:23:21.950 If you are collecting personal or sensitive data, that may include voice data, videos and pictures. 00:23:21.950 --> 00:23:30.700 You must apply the NSD for approval of the project. As part of the application you must enclose 00:23:30.700 --> 00:23:37.900 the research plan and this plan must include information about the sample, the data collection, the 00:23:37.900 --> 00:23:41.400 data time, how the data will be processed, NOTE Treffsikkerhet: 81% (HØY) 00:23:41.400 --> 00:23:51.400 and start. NSD has an advisory service for students and other researcher where you can get 00:23:51.400 --> 00:24:00.600 advice concerning the application and your project. If you are collecting health-related the data, 00:24:00.600 --> 00:24:09.200 you must apply in the regional committee for medical and health research ethics for approval of the 00:24:09.200 --> 00:24:11.300 project. Because this is NOTE Treffsikkerhet: 88% (HØY) 00:24:11.300 --> 00:24:21.000 a bit more complicated process I recommend you consulting your supervisor before doing so. NOTE Treffsikkerhet: 89% (HØY) 00:24:21.000 --> 00:24:31.900 As part of the fact that we got stricter privacy legislation a couple of years ago. The university 00:24:31.900 --> 00:24:39.800 has developed its regulation regarding privacy. They have also developed good websites where you can 00:24:39.800 --> 00:24:49.500 read about classification of data, among other things. This is an example of how data and information 00:24:49.500 --> 00:24:51.400 are classified in different NOTE Treffsikkerhet: 88% (HØY) 00:24:51.400 --> 00:24:59.100 colors. This is relevant to us as researcher because it has an impact on where we can 00:24:59.100 --> 00:25:03.000 process and store data. NOTE Treffsikkerhet: 77% (HØY) 00:25:05.400 --> 00:25:15.700 University has rules for how data and information in various categories can be stored. This is an 00:25:15.700 --> 00:25:22.400 excerpt from an information page that says something's about what can be stored on a personal 00:25:22.400 --> 00:25:31.200 computer. It is important that you familiarize yourself with these rules. As masters students you 00:25:31.200 --> 00:25:35.650 are in fact representatives of the University of Oslo. NOTE Treffsikkerhet: 67% (MEDIUM) 00:25:35.650 --> 00:25:40.800 That was all I had. Thank you.