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Principles of biomedical ethics

Ethics Committees generally ask that special consideration is given to the ways in which ‘vulnerable groups’ are accessed and give consent to participate in research to ensure that they understand what participation involves and are not coerced into taking part. The expectation is generally that the researcher should justify the importance of the research and the need to include ‘vulnerable’ populations and should identify the means whereby informed consent will be obtained – in many cases there will be an expectation that proxy consent (from a parent or relative) may be used to supplement the consent or assent from the individual who is not seen as competent to give consent in their own right (Baez 2002).
It has been argued that researchers should seek consent each time they collect data from a study participant to ensure that they are aware that data are being collected and that they are willing to continue participating in the study. However, the process whereby this can be achieved may be difficult. Should participants be asked to sign a consent form each time data are collected or should verbal consent be adequate Either way there is the risk that participants might get fed up with being repeatedly asked if they want to continue to participate. How can researchers be sure that people understand when research is being conducted
One way of managing this is to send transcripts of interviews to research participants to ensure they consent for the contents of their interview to be used in the study. (Beauchamp 2001) This may mean that participants want to amend the interview transcript if they are not happy with it. Additionally, some researchers view it as appropriate to seek consent for the ways that data collected are used by, for example, asking study participants’ approval for the way their data are presented in reports, publications and presentations. (see the discussion on anonymity above regarding consent for the use of pseudonyms or actual names). (Ramcharan 2001) This has a number of implications in relation to data ownership. Should participants be able to veto the way data are interpreted Should it be the case that only research that has the agreement of research participants be published What impact will this have on the nature of the research endeavor and the nature of critical social science (Hannigan 2003) Clearly the ways in which researchers respond to these issues will be dependent on the type of research approach adopted and the study aims. Nonetheless, it remains the responsibility of the researcher to obtain the consent, but the definition of ” informed” remains to be grasped.

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