[Scientific ethics and the use of human material or data].
A scientific article censured by superposing obstacles to its reading remembers the censure of Galileo made by the Inquisition. The censure followed the failure to obtain the informed consent (IC) to disclose results of old samples. At present, the use of collected data or samples for a new research needs a new IC, in most ethical protocols. The Helsinki Code allows the research ethics committees the authorization for the use of that information. This norm is founded rather in commercial, legal or protective arguments than in ethical bases. This article criticizes this norm from the Scientific Ethics viewpoint because: i) the ownership of the genome and environment that originate a person is not of such person but of the human society and Homo sapiens species, ii) a person is not the unique owner of that information; laboratories, institutions, health services and research teams add constituents to it, iii) several violations to this norm occurring in medical, labor, legal and social practice show it as biased against science, iv) if this stored information and its use are beneficial for humankind (its proper owner) it is ethically obligatory to use it. It is proposed to create an anonymous World Bank for Human Information with open access and universal transparency. This universal collection of data handled under universal accepted ethical norms should prevent exclusive private use of public information, non-publication of negative results, illicit and unethical use of human data.
Programa de Genética Humana, ICBM, Facultad de Medicina, Universidad de Chile, Chile. cvalenzu@med.uchile.cl
Carlos Y
CY
Valenzuela
D026688:Bioethical Issues; D018070:Biological Specimen Banks / Q000941:ethics*; D004992:Ethics, Medical; D006381:Helsinki Declaration; D016045:Human Genome Project; D006801:Humans; D007258:Informed Consent / Q000941:ethics*; D013048:Specimen Handling / Q000941:ethics*