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Carrying out research for policy and advocacy work
Carrying out research for policy and advocacy work

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2 Research ethics

‘Research ethics are the moral principles that govern how researchers should carry out their work’ (Wellcome Trust, 2014, p. 1). Research ethics ensures that the risk posed by research to others (such as colleagues, stakeholders, research participants, society or the environment) is considered and addressed where possible or mitigation put in place. For all research carried out within a university setting, proposals have to be approved by external objective individuals or committees to ensure that appropriate consideration has been given to the ethics of your proposal.

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Figure 3 Research ethics govern how policy research is carried out

Research ethics began after the Second World War as a reaction to the revelations of the atrocities committed by Nazi doctors experimenting on prisoners in concentration camps. In 1964, the World Medical Association adopted a declaration on research ethics called the Declaration of Helsinki. This set out ethical rules for carrying out research on humans, prioritising the wellbeing of the individuals above all other interests (European Commission, 2013, p. 3). Subsequently, there have been ethical rules published for research involving human participants in all fields of study.

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Figure 4 Henrietta Lacks

An example of unethical research is the use of HeLa cells in medical research. Henrietta Lacks suffered from cervical cancer and underwent a biopsy in 1951 (Nature, 2020). Some of the cells taken were subsequently grown successfully in culture, and this cell line became known as HeLa (taking the first letters from her name). They are still one of the most commonly used cell lines, with millions of cells being grown in laboratories around the world (Amon and Koenen, 2022, p. 3). However, Henrietta did not know about the use of her cells in research, did not consent to it, and the cells were not anonymised. When her family discovered the existence and use of these cells many years later, it led to a number of legal battles about the use of the cells in commercial and patented processes.