The Genome: Solidarity and Implementation

In one line

The last nine articles are about what States must do so that the first sixteen are not merely stated.

In the wording a student can write in an exam: article 17 requires States to respect and promote the practice of solidarity towards individuals, families and population groups particularly vulnerable to or affected by disease or disability of a genetic character, and to foster research on rare as well as endemic diseases; article 18 requires the fostering of international dissemination of scientific knowledge and of co-operation particularly between industrialized and developing countries; articles 20 and 21 require promotion of the principles through education and the facilitation of open international discussion; and articles 22 to 25 provide for implementation, including the role of the International Bioethics Committee under article 24 and the saving clause in article 25.

Article 17: solidarity

States should respect and promote the practice of solidarity towards individuals, families and population groups who are particularly vulnerable to or affected by disease or disability of a genetic character. They should foster, inter alia, research on the identification, prevention and treatment of genetically based and genetically influenced diseases, in particular rare as well as endemic diseases which affect large numbers of the world's population.

Three things in one article, and each is worth separating.

Solidarity is named as a practice. The word is unusual in a rights instrument, which ordinarily speaks of obligations and entitlements. Solidarity denotes something States are to respect and promote rather than a duty owed to an identified claimant, and it is directed at how a society treats those affected by genetic disease rather than at any particular transaction.

The protected class is drawn widely. Individuals, families and population groups, and those particularly vulnerable to as well as affected by disease or disability of a genetic character. Including families is a recognition of the shared property of genetic information developed in [Biotechnology, Genetics and Human Dignity]; including those merely vulnerable extends protection to people who are not ill.

Rare and endemic diseases are named together. This is the most practically significant part of the article. Rare diseases attract no commercial research because the market is too small; endemic diseases which affect large numbers of the world's population attract none because the affected population cannot pay. The two failures are opposite in cause and identical in effect, and the article requires States to foster research on both, which is the neglected-disease problem stated in a 1997 instrument.

Articles 18 and 19: international co-operation

Article 18. States should make every effort to continue fostering the international dissemination of scientific knowledge concerning the human genome, human diversity and genetic research, and to foster scientific and cultural co-operation, particularly between industrialized and developing countries.