Genetic Data: What It Is and Why It Is Special
Chapter Ninety-Nine
Syllabus topic 4, "Issue of Human Rights Ethics in Scientific and Technological Development."
Pages 594 to 600 of 951
In one line
Four reasons why a genetic record is unlike every other record a person has, stated in one article of one instrument.
In the wording a student can write in an exam: the International Declaration on Human Genetic Data 2003 governs the collection, processing, use and storage of human genetic data, human proteomic data and the biological samples from which they are derived; article 4 states that such data have a special status because they can be predictive of genetic predispositions, may have a significant impact on the family including offspring, extending over generations, and in some instances on the whole group to which the person belongs, may contain information whose significance is not necessarily known at the time of collection, and may have cultural significance; and article 5 confines the purposes for which they may be dealt with to four.
Why a separate instrument was needed
The 1997 Declaration is about the genome; this one is about the data. The distinction is not pedantic, and stating it is the first move in any answer.
A genome is a biological fact about a person. Genetic data is a record, held by somebody, in a system, capable of being copied, combined, transferred and searched. Everything that makes data protection a separate discipline from bodily integrity applies, and it applies with the additional features that article 4 identifies.
The structure follows the life of the data, and knowing it is the quickest way into a question:
| Part | Articles | Stage |
|---|---|---|
| A | 1 to 7 | General provisions |
| B | 8 to 12 | Collection |
| C | 13 to 15 | Processing |
| D | 16 to 19 | Use |
| E | 20 to 22 | Storage |
| F | 23 to 27 | Promotion and implementation |
Articles 1 and 2: aims and terms
Article 1 states the aims and scope: to ensure respect for human dignity and protection of human rights and fundamental freedoms in the collection, processing, use and storage of human genetic data, human proteomic data and the biological samples from which they are derived, in accordance with the requirements of equality, justice and solidarity, while giving due consideration to freedom of thought and expression, including freedom of research.
Article 2 defines the terms, and three matter for an answer: human genetic data, information about heritable characteristics of individuals obtained by analysis of nucleic acids or by other scientific analysis; human proteomic data, information pertaining to an individual's proteins; and biological sample, any sample of biological material from which genetic data can be derived.
The inclusion of proteomic data and of biological samples is deliberate. Protecting the data alone would leave the sample from which it can be re-derived unprotected, so the instrument reaches the material as well as the record.
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