International Bioethics Committee

The International Bioethics Committee (IBC) of UNESCO

UNESCO

The United Nations Educational, Scientific and Cultural Organization is a specialized agency of the United Nations...

 is a body composed of 36 independent experts from all regions and from different disciplines (mainly medicine, genetics, law, and philosophy) that follows progress in the life sciences and its applications in order to ensure respect for human dignity and human rights

Human rights

Human rights are "commonly understood as inalienable fundamental rights to which a person is inherently entitled simply because she or he is a human being." Human rights are thus conceived as universal and egalitarian . These rights may exist as natural rights or as legal rights, in both national...

. It was created in 1993 by Dr Federico Mayor Zaragoza, General Director of UNESCO at that time. It has been prominent in developing Declarations with regard to norms of bioethics that are regarded as soft law

Soft law

The term "soft law" refers to quasi-legal instruments which do not have any legally binding force, or whose binding force is somewhat "weaker" than the binding force of traditionallaw, often contrasted with soft law by being referred to as "hard law"...

 but are nonetheless influential in shaping the deliberations, for example, of research ethics committees (or Institutional review board

Institutional review board

An institutional review board , also known as an independent ethics committee or ethical review board , is a committee that has been formally designated to approve, monitor, and review biomedical and behavioral research involving humans with the aim to protect the rights and welfare of the...

) and health policy.

Universal Declaration on Human Genome and Human Rights

In 1993, the IBC was entrusted with the task of preparing an international instrument on the human genome, the Universal Declaration on the Human Genome and Human Rights, which was adopted by the General Conference of UNESCO in 1997 and endorsed by the General Assembly of the United Nations

United Nations

The United Nations is an international organization whose stated aims are facilitating cooperation in international law, international security, economic development, social progress, human rights, and achievement of world peace...

 in 1998. The main purpose of this instrument is to protect the human genome from improper manipulations that may endanger the identity and physical integrity of future generations. To this end, it recognizes the human genome as “the heritage of humanity” (Article 1), and declares “contrary to human dignity” practices such as human cloning

Human cloning

Human cloning is the creation of a genetically identical copy of a human. It does not usually refer to monozygotic multiple births nor the reproduction of human cells or tissue. The ethics of cloning is an extremely controversial issue...

 (Article 11) and germ-line interventions (Article 24). In addition, the Declaration intends to prevent genetic reductionism, genetic discrimination

Genetic discrimination

Genetic discrimination occurs when people are treated differently by their employer or insurance company because they have a gene mutation that causes or increases the risk of an inherited disorder. People who undergo genetic testing may be at risk for genetic discrimination.The results of a...

, and any use of genetic information that would be contrary to human dignity and human rights

Human rights

Human rights are "commonly understood as inalienable fundamental rights to which a person is inherently entitled simply because she or he is a human being." Human rights are thus conceived as universal and egalitarian . These rights may exist as natural rights or as legal rights, in both national...

.

International Declaration on Human Genetic Data

In 2003, the IBC issued a second global instrument, the International Declaration on Human Genetic Data, which may be regarded as an extension of the 1997 Declaration. This document sets out a number of rules for the collection, use and storage of human genetic data. It covers, among other issues, informed consent in genetics; confidentiality of genetic data; genetic discrimination

Genetic discrimination

Genetic discrimination occurs when people are treated differently by their employer or insurance company because they have a gene mutation that causes or increases the risk of an inherited disorder. People who undergo genetic testing may be at risk for genetic discrimination.The results of a...

; anonymization of personal genetic information; population-based genetic studies; the right not to know one’s genetic make up; genetic counselling; international solidarity in genetic research, and benefit sharing.

Universal Declaration on Bioethics and Human Rights

The last global instrument drafted by the IBC is the Universal Declaration on Bioethics and Human Rights, which has a much broader scope than the two previous documents. It aims to provide a comprehensive framework of principles that should guide biomedical activities, in order to ensure that they are in conformity with international human rights law. The academic Thomas Alured Faunce

Thomas Alured Faunce

Thomas Alured Faunce is an Associate Professor jointly in the College of Law and Medical School at the Australian National University at Canberra Australia...

 has analysed this Declaration's non-binding social responsibility

Social responsibility

Social responsibility is an ethical ideology or theory that an entity, be it an organization or individual, has an obligation to act to benefit society at large. Social responsibility is a duty every individual or organization has to perform so as to maintain a balance between the economy and the...

, technology transfer

Technology transfer

Technology Transfer, also called Transfer of Technology and Technology Commercialisation, is the process of skill transferring, knowledge, technologies, methods of manufacturing, samples of manufacturing and facilities among governments or universities and other institutions to ensure that...

 and transnational benefit principles which expressly apply to private and public corporations as well as states

Sovereign state

A sovereign state, or simply, state, is a state with a defined territory on which it exercises internal and external sovereignty, a permanent population, a government, and the capacity to enter into relations with other sovereign states. It is also normally understood to be a state which is neither...

. He has argued that it has promoted a normative intersection between international human rights law

International human rights law

International human rights law refers to the body of international law designed to promote and protect human rights at the international, regional and domestic levels...

and bioethics as academic disciplines.