How does the Council consider ethical issues raised by its own activities?

Policy for ethical conduct of consultative activities

The Council often carries out activities that aim to find out about people’s knowledge, views and experiences. These activities can include open calls for evidence, calls for evidence aimed at particular groups of people, online surveys, stakeholder meetings, deliberative workshops and school workshops.

Before carrying out consultative activities, the Council determines any ethical issues raised, for example relating to informed consent, sensitive topics, vulnerable participants, anonymity, confidentiality and data storage and protection. Activities that raise ethical issues could include those:

  • involving potentially vulnerable people, for example, children and young people, those with a learning disability or cognitive impairment;
  • involving people who lack capacity;
  • involving sensitive topics, for example people’s sexual behaviour, their illegal or political behaviour, their experience of violence, their abuse or exploitation, their mental health, or their gender or ethnic status;
  • involving people where permission of a gatekeeper is normally required for initial access;
  • that would or might induce psychological stress, anxiety or humiliation;
  • undertaken outside of the UK where there may be issues of local practice and political sensitivities;
  • involving visual or vocal methods where people may be identifiable in the visual images or audio information used or generated, and when anonymity is important;
  • which may involve data sharing of confidential information beyond the initial consent given.

Most of the consultative activities carried out by the Council are likely to involve a minimal risk of harm to the participants. The Council will seek independent ethical review if the risks of an activity are deemed to be particularly high.

Previous work

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Nuffield Council on Bioethics
28 Bedford Square
London
WC1B 3JS

bioethics@nuffieldbioethics.org

+44 (0)20 7681 9619

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