individual consent vs community consent

DE ORTÚZAR, M. G

Edinburgh, Scotland

Encuentro; THE HUMAN GENOME MEETING; 2001

Despite growing support for the development of ethical and social principles governing genetic research, there is a considerable gap between economical support for scientific programmes and  support for research on the social impact of genetic research.                 In the present paper we have focused on a study of the morally relevant requirements that should be satisfied in all genetic research with human populations. Taking a universalistic and public moral theory as a starting point, we have analyzed two cases (the Icelandic Health Care Database and the genetic research on the Ashkenazi community, USA). Respect for rights, desires and relevant rational belief of human research subjects  were assessed. We also focused on how subjects are informed about the psychological and social risks of research, and to what extent the balance between risks and benefits is in favor of the interests of the same subjects.                 As a general conclusion, we argue against the possibility of substituting individual "informed consent" with "community consent", "community consultation" or "presumed consent". We hold that the State, International Organizations and citizens should take part in ethical discussions, carried out by deliberative commissions, in order  to provide norms that regulate this area of research, which is so important that it should not be left to "market forces" or media pressures.