12/07/05

Ethics, science and human rights come together

Young man signing consent form to participate in clinical trial in Iran Copyright: WHO/TDR/Crump

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UNESCO has issued a draft declaration it says will be the first ever to commit governments to take a position on the ethical and human rights dilemmas raised by modern research.

"Every culture, even those most critical of technological advances, must develop a response — be it supportive or controlling — to the emergence of new technologies […] To do nothing is to make a decision," states an accompanying memorandum.

The draft declaration, released on 24 June, is intended by UNESCO (the United Nations Educational, Scientific and Cultural Organization) to provide guidance on how to draft laws that regulate ethics and human rights in science.

It urges states to consider ethical questions from a ‘human rights perspective’: at its heart is the statement that the welfare of the individual should have priority over the interests of society or governments.

It stresses, for instance, the importance of obtaining prior informed consent from participants in scientific research, and that community or third-party consent should never be a substitute for the consent of the participating individual.

It also highlights the importance of access to scientific and technological information, particularly in developing countries, and says governments should promote the sharing and free flow of scientific information.

With regards to preserving biodiversity and indigenous knowledge, especially in developing countries, it emphasises the importance of people being able to access their local genetic resources and traditional knowledge systems.

Carolyn Stephens, a lecturer in ethics, human rights and public health at the London School of Hygiene and Tropical Health, told SciDev.Net that the declaration "is especially important in these times when many marginalised peoples all over the world have no support and think the world is simply exploiting them for medical science".   

 

The declaration encourages governments to set up ethics committees to assess scientific developments, help keep the public informed and encourage public discussion of bioethics issues.

Although guidelines on ethical and human rights issues exist, this is the first time the two subjects have been combined in a single document aimed at governments, says the director of UNESCO’s division of ethics of science and technology, Henk ten Have.

As an example, he points out that the Helsinki Declaration on research ethics is adopted only by the World Medical Association, a professional organisation.

Common international standards would benefit developing countries in particular, ten Have told SciDev.Net, as they tend to have weak ethics regulation systems.

The draft declaration will be submitted for approval by all 192 UNESCO member states in October. Ten Have does not expect the final text to differ significantly.

Link to UNESCO draft declaration on bioethics and human rights

Read more about research ethics in SciDev.Net’s ethics of research dossier.

To find out more about the "free flow of scientific information", visit our quick guide on Science Publishing.