CREATE & MANAGE DATA
CONSENT & ETHICS
CONSENT / HISTORY OF CONSENT
The historical origin of current ethical principles for conducting research with human subjects arises from the post Second World War Nuremberg Code. The World Medical Association Declaration of Helsinki provides guidance for physicians in biomedical research with human subjects.
The Nuremberg Code emerged following the Nuremberg Trials which took place after the Second World War. The Code set out statements of certain moral, ethical and legal principles relating to research involving human subjects.
The Declaration of Helsinki was adopted in 1964 by the World Medical Association and was most recently amended in 1989 and 1996. The principles for conducting research contained in the Declaration apply to all human subjects. For example, adequate information must be provided to the research participants, participation in the research must be freely volunteered, with the understanding that the research subject can withdraw at any time and, in addition, informed consent should be obtained, preferably in writing. The ethical guidelines of many professional organisations endorse this principle.
Ethical guidelines and rules of conduct are provided by the various professional and commercial organisations within the field of social science research. This community has long recognised the importance of respecting the rights of research participants.
All have much in common in their recommendations and all reflect the general principles prevalent within the social science research community. Some, however, give more detail with regard to issues such as interviewing in difficult circumstances, researching sensitive topics and legal positions. They are meant, primarily, to inform members' ethical judgements rather than to impose upon them an external set of standards, thereby placing the ultimate responsibility for ethical decisions relating to a research project firmly with the researcher.
All of these guidelines stress the responsibility of researchers to protect the well-being of participants, as well as maintaining the integrity of their profession. Research should, as far as possible, be based on freely volunteered informed consent of those studied. This implies a responsibility to explain fully and meaningfully what the research is about and how it will be disseminated. Participants should: be aware of their right to refuse to participate; understand the extent to which confidentiality will be maintained; be aware of the potential uses to which the data might be put; and in some cases be reminded of their right to re-negotiate consent.