Commentary on the UNESCO IBC report on respect for vulnerability and personal integrity: (Article 8 of the Universal Declaration on Bioethics And Human Rights)

As a member of the UNESCO International Bioethics Committee (IBC) in 2005, I was privileged to serve on the small drafting group of the Universal Declaration on Bioethics and Human Rights, which was expertly chaired by the Australian Justice Michael Kirby. That draft matured over two years and was adopted by acclamation at the General Assembly of UNESCO in 2005. The project was conceived out of dissatisfaction with the generally perceived preoccupation of bioethics with the professional clinical encounter and related matters that tended to ignore larger issues related to human rights. As the only global bioethics body representing 193 member states in the world, the IBC was well placed to attempt the achievement of a universal instrument that would encourage and facilitate the growth of bioethics and the application of bioethical principles among peoples of all nations in the areas of health care, health research, and the development and application of new biotechnologies. As such, it is the only society-generated, as opposed to professionally generated, consensus code prepared by an international body in which there is worldwide public participation.¹

Subsequent to its adoption, the IBC has been engaged in efforts to disseminate the Declaration. Part of this exercise has involved the production of reports on numbers of its twenty-eight Articles. This year I was delighted as president of the committee to deliver the Report on Article 8, which is the subject of this commentary. This Report follows reports on Article 6 on Consent and Article 14 on Social Responsibility. There are numerous cross references in these reports in accord with Article 26, which stresses the interdependence of the various Articles. Article 8 reads:

In applying and advancing scientific knowledge, medical practice and associated technologies, human vulnerability should be taken into account. Individuals and groups of special vulnerability should be protected and the personal integrity of such individuals respected.

The Reports are written for the addressees of the Declaration, viz. states, individuals, groups, communities, and public and private social institutions. They are not intended to be academic but rather as practical documents that clarify the Declaration and facilitate its implementation.

The first step in the production of the Report concerned the role that a general definition of vulnerability should play. It was noted that much has been written of the fragility of human life, a fact bound up with our mortality and essentially a species concept. Such vulnerability cannot be dismissed; vulnerability is part of the human condition. However, the Article in question refers to special vulnerabilities that can only be recognized and addressed in the particular contexts in which they occur. It was agreed that any candidate for an overall definition would either be too general to identify particular cases or too specific to include all possible cases. Thus, it was decided to use the expository section of the Report to demonstrate the diversity of such vulnerabilities and the contexts in which they are produced in order to create sensitivity to their possible occurrence in any cultural setting in the world. The determinants of these vulnerabilities divide into two general groups. First are those caused by what might be called internal states in individuals, such as physical or mental conditions connected with disease, disability, and the normal stages of life. Second are those caused by cultural, social, political, or environmental determinants.

This strategy does not rule out the possibility that there may be some groups of people, widely distributed geographically and culturally, who suffer common vulnerabilities that are not universal in that they do not attach to all human beings. Children are an obvious case and, more generally, so are females, both children and adult. Indeed, the latter group is specifically identified and discussed in the Report. Such a group or groups would, of course, suffer with all others in the world the fragility of life that is part of the human condition.

This contextualization of special vulnerability is then applied to the three areas of focus of the Universal Declaration: the health...