Research on the Genome and Its Limits

In one line

The Declaration permits research on the genome, subordinates it to rights, prohibits a class of practice by reference to dignity alone, and then tells States what conditions to create so that the research can be done well.

In the wording a student can write in an exam: article 10 provides that no research or research application concerning the human genome should prevail over respect for the human rights, fundamental freedoms and human dignity of individuals or groups; article 11 provides that practices which are contrary to human dignity, such as reproductive cloning of human beings, shall not be permitted; article 12 requires that benefits from advances concerning the genome be made available to all and states that freedom of research is part of freedom of thought; and articles 13 to 16 set the conditions for scientific activity, being the responsibilities of researchers, the State's duty to foster the conditions for free research, the requirement that results not be used for non-peaceful purposes, and the promotion of independent, multidisciplinary and pluralist ethics committees.

Article 10: the ordering principle

No research or research applications concerning the human genome, in particular in the fields of biology, genetics and medicine, should prevail over respect for the human rights, fundamental freedoms and human dignity of individuals or, where applicable, of groups of people.

The article establishes an order of priority rather than a prohibition, and that is its importance. It does not say research is subordinate to convenience, or to opinion, or to regulation; it says that where research or its application collides with human rights, fundamental freedoms and human dignity, the latter prevail.

Two features are worth noting. The reference to groups of people is unusual, and it matters for genetic research because a finding about a population, an ethnic group or a community can injure every member of it without identifying any of them. And the phrase "or research applications" extends the ordering to what is done with the knowledge, not merely to the conduct of the study.

Article 11: dignity as an operative standard

Practices which are contrary to human dignity, such as reproductive cloning of human beings, shall not be permitted. States and competent international organizations are invited to co-operate in identifying such practices and in taking, at national or international level, the measures necessary to ensure that the principles set out in this Declaration are respected.

This is the most important sentence in the module for the purposes of a question about what dignity does, and three things should be said about it.

The prohibited class is defined by dignity alone. Not by safety, not by efficacy, not by public opinion. The article does not say reproductive cloning is dangerous or unproven; it says the class of prohibited practices is the class of practices contrary to human dignity, and reproductive cloning is given as an instance of the class.