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The Bioethics Declaration: the Core Principles

Chapter One Hundred Four

Syllabus topic 4, "Issue of Human Rights Ethics in Scientific and Technological Development."

Pages 627 to 632 of 951

In one line

Eight articles that move outward from the individual decision to the community, and one of them says that culture may not be used to defeat the rest.

In the wording a student can write in an exam: articles 6 to 13 state the principles governing the person: consent in article 6, persons without the capacity to consent in article 7, human vulnerability and personal integrity in article 8, privacy and confidentiality in article 9, equality, justice and equity in article 10, non-discrimination and non-stigmatization in article 11, respect for cultural diversity and pluralism in article 12, and solidarity and cooperation in article 13; and article 12 contains the Declaration's most important qualification, that cultural considerations are not to be invoked to infringe dignity, human rights and fundamental freedoms, nor the Declaration's principles, nor to limit their scope.

Articles 6 to 8: recapitulated in order

These three are taken in full elsewhere and are placed here so that the Declaration's own structure is visible.

Article 6, consent. Preventive, diagnostic and therapeutic intervention only with the prior, free and informed consent of the person, based on adequate information, express where appropriate and withdrawable at any time and for any reason without disadvantage or prejudice; research requiring consent that is additionally express, on information in a comprehensible form including the modalities for withdrawal; and a collective community agreement or the consent of a community leader or other authority never substituting for an individual's informed consent.

Article 7, persons without the capacity to consent. Authorisation in accordance with best interest and domestic law, with the person involved to the greatest extent possible in consenting and withdrawing; research only for direct health benefit, save by way of exception, with the utmost restraint, at minimal risk and minimal burden, to benefit others in the same category; and refusal to be respected.

Article 8, vulnerability. Human vulnerability should be taken into account, and individuals and groups of special vulnerability should be protected and the personal integrity of such individuals respected.

Note the progression the Declaration builds: the competent person decides (6); the person who cannot decide is decided for, on a standard that keeps them involved (7); and the person who can decide but cannot decide freely is protected (8). Those are the three positions a person can occupy, and the instrument addresses each.

Article 9: privacy and confidentiality

The privacy of the persons concerned and the confidentiality of their personal information should be respected. To the greatest extent possible, such information should not be used or disclosed for purposes other than those for which it was collected or consented to, consistent with international law, in particular international human rights law.

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