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| − | |Instruction Step Title=Key Issues | + | |Instruction Step Title=Test |
| − | |Instruction Step Text=In many cases participation in research does not pose '''risks to research participants''', for example, filling in an anonymous questionnaire usually is easy, and no risks are associated with it (nevertheless, sometimes sensitive questions may pose psychological risk). In some other types of research, participation can pose physical or psychological risks. For example, participants of biomedical research who are exposed to experimental treatments might face risks to physical well-being; research in psychology may lead to emotional distress among participants; studies dealing with sensitive information may raise risks for the privacy and confidentiality of participants; some research topics may be socially sensitive and research participants might face social consequences or stigma. In citizen science, sharing data sometimes might pose a privacy risk to the citizen scientists themselves. This might be a case when, for example, management of citizen science programs requires collecting private information about volunteers. | + | |Instruction Step Text=#Use the flashcards below to test your knowledge! |
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| − | The '''rights and interests of research participants''' are arguably the cornerstone of research ethics and in the traditional research ethics setting there has been developed a certain framework of how these rights are applied in different fields of research. Citizen science however introduces some additional challenges that need to be addressed. Many citizen science projects are conducted outside traditional academic or commercial settings. This raises the issue of ethics oversight of these studies and whether citizen scientists have the necessary research ethics training.
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| − | Research involving human research participants is guided by various laws and ethical guidelines. These legal and ethical standards embody important ethical principles and requirements (Emanuel et al 2000; Resnik 2019):
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| − | *'''Social value''' means that to justify the participation of human subjects, research should be expected to yield results that can benefit society.
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| − | *Evaluation of the '''risk/benefit ratio''' means that risks posed by participation in a research study should be minimized and justified in terms of the potential benefits to the research participants and society.
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| − | *'''Informed consent''' means that research participants should receive adequate information about the planned research and their voluntary consent should be sought and appropriately documented.
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| − | *'''Confidentiality''' is required to protect personal data and privacy of research participants.
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| − | *'''Data safety''' monitoring means that research data should be adequately protected to avoid harming, e.g., stigmatizing research participants.
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| − | *'''Fair selection of subjects''' means that the selection of research participants should be based on sound scientific and ethical criteria.
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| − | *'''Protection of vulnerable subjects''' requires to ensure additional protections for research participants who may be vulnerable to coercion, exploitation, or harm.
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| − | *'''Independent review''' is a requirement applied to some types of research, e.g. biomedical research involving human research participants should be reviewed by an independent research ethics committee according to the national legal framework.
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| − | For a research study to be ethical, researchers, including citizen scientists, must comply with all the requirements and principles mentioned above. For example, poorly designed studies will not yield valuable results and therefore, the risks that research participants have been exposed to during the study will be unjustified. One of the suggested ways to avoid these problems is to closely collaborate with professional scientists who are experts in a particular field of research (Resnik 2019).
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| − | '''References'''
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| − | #Emanuel, E. J., Wendler, D., & Grady, C. (2000). What Makes Clinical Research Ethical? ''JAMA'', 283(20), 2701–2711. https://doi.org/10.1001/jama.283.20.2701
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| − | #Resnik, D. B. (2019). Citizen scientists as human subjects: Ethical issues. ''Citizen Science: Theory and Practice'', 4(1). https://doi.org/10.5334/cstp.150
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Instructions
