What's in a Name?: Bioethics -- and Human Rights -- at UNESCO

Two UNESCO advisory committees met in Paris for a week in January to review a draft of the proposed Declaration on Universal Norms on Bioethics. The document is the latest effort of UNESCO's Bioethics Programme, which produced the Universal Declaration on the Human Genome and Human Rights. That document was adopted by the United Nations in 1998.

The new draft declaration was prepared during the last year by the International Bioethics Committee (IBC), composed of independent professionals with experience in bioethics. At the Paris meeting, the Intergovernmental Bioethics Committee (IGBC), composed of representatives of thirty-six member nations, provided their governments' input to the IBC. Also participating were many observers from nonmember nations and NGOs. Later this year, the UNESCO General Conference will consider the declaration for adoption.

The Paris meeting was an opportunity to witness several ongoing transitions in bioethics: from a philosophical to a legal orientation, from national to international standards, and from professional to political policymaking.

The IGBC met first, then a joint session of both committees, and finally a session of the IBC. Most attending members of both committees participated in all three sessions, playing a stately game of musical chairs as the seat assignments and chair persons switched. Though somewhat repetitious and contentious, the discussion at the meeting appeared to satisfy the participants, perhaps because there will be another opportunity for the government representatives to debate points of disagreement. Shortly after the meeting, the IBC produced its final "preliminary draft."Next, an intergovernmental meeting of experts will convene this spring to develop the final version for consideration by the General Conference.

The original title of the document, Declaration on Universal Norms on Bioethics, presaged a restatement of traditional bioethics principles. However, in an "explanatory memorandum" on the preliminary draft, the IBC has recommended a new title, Universal Declaration on Bioethics and Human Rights, "to establish the conformity of bioethics with international human rights law." The new title accurately reflects a document that cites human rights as a fundamental principle of bioethics and is studded throughout with references to human rights, in addition to restating the traditional principles. The Universal Declaration of Human Rights, which the United Nations adopted in 1948, already establishes human rights as a "common standard." The new declaration, specific to bioethics, may energize the implementation of the human rights standard in this field.

Not all were pleased by the new title, but the dominant sentiment favored it. An Argentine observer provoked spontaneous applause when he proclaimed, "Referring to bioethics without human rights is not bioethics!" Bioethicists from the United States should take note: neither the Belmont Report nor the Federal Common Rule mentions human rights.

In addition to human rights, the draft declaration invokes social responsibility—another broadening of traditional bioethics. One provision, strongly supported by the Latin American participants, calls for ensuring that progress in science and technology contributes where possible to the goals of access to health care ("including for reproductive health"), adequate nutrition, improvement of living conditions and environment, elimination of the marginalization of persons, and reduction of poverty and illiteracy (Article 13). The reproductive health clause was retained over the objection of the United States delegation, which complained the reference was controversial—surely a bootstrapping argument but likely to be repeated in the upcoming IGBC meeting.

Recalling the early coinage of "bioethics," the declaration includes responsibility toward the biosphere (Article 15). The declaration also reflects communitarian values, especially in regard to the needs of developing countries. One provision calls for "solidarity" (Article 12) and a more specific one for sharing the benefits from scientific research and applications (Article 14).

What effect will the declaration have? It will surely not guarantee universal compliance with its provisions, or even their uniform interpretation by those willing to comply. It is not a law but a declaration: essentially precatory, rhetorical, admonitory. Its compliance mechanism is limited to states' self-reporting of their implementing steps. But the declaration may advance bioethics in at least two ways: First, although it does not address specific issues, it may promote general recognition of bioethics concerns and the need for...