The analogy between genetic samples and information

8.27 DP 66 suggested that genetic samples are closely analogous to other immediate sources of information that are protected by information privacy principles.[27]

8.28 DNA is often popularly referred to as a ‘genetic code’ and the genome as a ‘book’. The four bases of DNA (A-G-C-T)[28] are sometimes called the ‘genetic alphabet’. Genetic science itself is replete with the language of information and information technology—for example, there are bases, codons, messenger RNA, transcription and translation.[29]

The idea of the genome as a book is not, strictly speaking, even a metaphor. It is literally true. A book is a piece of digital information, written in linear, one-dimensional and one-directional form and defined by a code that transliterates a small alphabet of signs into a large lexicon of meanings through the order of their groupings. So is a genome.[30]

8.29 One view expressed to the Inquiry was that a distinction needs to be drawn between privacy protection of personal information and the sources of that information.[31]A basis for this distinction might be that, unlike a book or other written information, technology must intervene to create genetic information from a genetic sample. However, if a book exists in electronic form, technology will also be required to intervene. Computerised information, whether on a hard drive, a CD–ROM or some other format, requires technological intervention before information may be derived from the bytes recorded. Yet there is no question that personal data on an encrypted CD-ROM is considered to be ‘information’ in a ‘record’ for the purposes of the Privacy Act. Modern genetic sequencing technology may make genetic samples as immediate a source of information as, for example, a computer disk or database, which are already covered by the Privacy Act.

[27] Australian Law Reform Commission and Australian Health Ethics Committee, Protection of Human Genetic Information, DP 66 (2002), ALRC, Sydney [7.58]–[7.67].

[28] Adenine; guanine; thymine; cytosine.

[29] See the genetics primer in Ch 2.

[30] M Ridley, Genome: The Autobiography of a Species in 23 Chapters (1999) Fourth Estate, London, 7–8.

[31] Office of the Federal Privacy Commissioner, Submission G143, 22 March 2002.