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Research procedures were in accordance with Helsinki Declaration for protection of human subjects from research risks and consent of research subjects and informants was obtained in advance as mandated by the Code of Ethics of the International Sociological Association.
Failure to distinguish the consequences of research participation from receiving ordinary treatment may seriously undermine the informed consent of research subjects.
Informed consent of research study participants begins with the recruitment process.
In most countries, research involving identifiable individuals or information requires the informed consent of research participants and research ethics committee (REC) approval at each project site.
At the same time, signed informed consent of research projects of every patient with patients themselves or their guardians was obtained.
Massively-parallel sequencing (MPS) technologies create challenges for informed consent of research participants given the enormous scale of the data and the wide range of potential results.
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We ensured that the participants fully understood the intention and content of research consent forms.
Reasons for exclusion included supraclavicular nodal disease only (n=29), misclassification of recurrent disease (n=15), and patient refusal of consent for research use of clinical information (n=6).
The role of consent for research use of health information is contentious.
Concerning preferred models of consent for research use of biosamples, survey responders preferred specific consent with recontact for each study for which their biosamples are eligible.
Briefly, public attitudes on the need for and type of consent for research use of their health information are context-specific.
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Justyna Jupowicz-Kozak
CEO of Professional Science Editing for Scientists @ prosciediting.com