Toward a legal-ethical framework for regulating human genetic information in vulnerable populations: an issue of justice

DE ORTÚZAR, MARÍA GRACIELA

Journal of International Biotechnology Law

Gruyter

Lugar: Berlin; Año: 2009 vol. 06 p. 12 - 20

1612-6068

ABSTRACT The main purpose of this work is to discuss the legal, psycho-social and ethical issues posed when handling genetic information in genomic research within developing countries. Following the method of ?reflective equilibrium?(Rawls-Daniels) and from an interdisciplinary approach, I shall go through: (1) current normative laws concerning its regulation, advantages and limitations; (2) the psycho-social impact of genetics on health issues; and (3) the ethical grounds that should be taken into account in establishing the normative framework for the regulation of genetic information.  In general terms, my opinion is that the ethical grounds of the normative framework regarding research with human beings cannot be formal or based exclusively on the law (e. g. ?bureaucratisation of informed consent?). My suggestions is that a critical notion of real autonomy and material wellbeing of the moral person (following Doyal- Sen-Van Parijs) should be applied to justify the distributive principles implied in any research on human beings, in particular in genomic research (benefit sharing.)