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Abstract
El término "vulnerabilidad" encierra una gran complejidad. Hace referencia a la posibilidad del daño, a la finitud y a la condición mortal del ser humano. Sin embargo, tiene diversas dimensiones. Al menos una dimensión antropológica, que afirma la condición de vulnerabilidad del ser humano en cuanto tal, y una dimensión social, que subraya una mayor susceptibilidad generada por el medio o las condiciones de vida, dando lugar a "espacios de vulnerabilidad" y "poblaciones vulnerables". La dimensión social nos conduce a hablar de las capacidades y el reconocimiento como elementos clave del vínculo entre los seres humanos que es fundamento de la obligación moral. Esta obligación es fundamentalmente de cuidado y solidaridad en el marco de la justicia.
Vulnerability is one of the least examined concepts in research ethics. Vulnerability was linked in the Belmont Report to questions of justice in the selection of subjects. Regulations and policy documents regarding the ethical conduct of research have focused on vulnerability in terms of limitations of the capacity to provide informed consent. Other interpretations of vulnerability have emphasized unequal power relationships between politically and economically disadvantaged groups and investigators or sponsors. So many groups are now considered to be vulnerable in the context of research, particularly international research, that the concept has lost force. In addition, classifying groups as vulnerable not only stereotypes them, but also may not reliably protect many individuals from harm. Certain individuals require ongoing protections of the kind already established in law and regulation, but attention must also be focused on characteristics of the research protocol and environment that present ethical challenges.
Human beings are essentially vulnerable in the view that their existence qua humans is not given but constructed. This vulnerability received basic protection from the State, expressed in the form of the universal rights all citizens are meant to enjoy. In addition, many individuals fall prey to destitution and deprivation, requiring social action aimed at recognising the specific harms they suffer and providing remedial assistance to palliate or remove their plights. Citizens receive protection against their biologic vulnerability by means of an in rem right to health [care], which is more an attitude of protection than a specific programme. When individuals become susceptible, that is, biologically weak or diseased, they also increase their predisposition to additional harm, and require social actions to treat their demeaned condition. Such assistance takes the form of positive healthcare rights. Research on human beings has been slow to observe that the subjects recruited are susceptible, especially so if research is done in less developed countries. By mislabelling them as vulnerable--a characteristic they share with all humans--sponsors avoid registering the deprivation these people suffer, and the ethical obligation to offer them remedial help. The distinction between vulnerability and susceptibility also marks the difference between being intact but fragile--vulnerable--and being injured and predisposed to compound additional harm--susceptible. Awareness of this difference should give additional force to the rejection of double standards in research ethics.
This article summarizes some of the results of the BIOMED II project "Basic Ethical Principles in European Bioethics and Biolaw" (1995-1998) connected to a research project of the Danish Research Councils "Bioethics and Law" (1993-1998). The BIOMED project was based on cooperation between 22 partners in most EU countries. The aim of the project was to identify the ethical principles of respect for autonomy, dignity, integrity and vulnerability as four important ideas or values for a European bioethics and biolaw. The research concluded that the basic ethical principles cannot be understood as universal everlasting ideas or transcendental truths but they rather function reflective guidelines and important values in European culture. The method of the research was conceptual, philosophical analysis of the cultural background of the four values or normative ideas that people use and find important in their existence. Moreover, this was combined with analysis of empirical legal material and policy documents. Also, a number of qualitative interviews with relevant experts were carried out. Another important result of the BIOMED project was the partner's Policy Proposals to the European Commission, the Barcelona Declaration, unique as a philosophical and political agreement between experts in bioethics and biolaw from many different countries. The Policy Proposals are reprinted here at the end of the article.
