WE ARE TURNING our bodies into data. Since information can confer both power and wealth, we are at risk of a new slavery, with its attendants of old: loss of self sovereignty, discrimination, corrosion of individual identity, dignity denied.
At risk only – this is not a prediction – but sufficiently at risk to make it prudent pre-emptively to develop the language of a new emancipation. For that, too, the past offers sources: habeas corpus (already sometimes called “habeas data”); the Universal Declaration of Human Rights, especially its concern for privacy in Article 17; and some of the more recent international standards that are attempting to update old liberties and protections for the digital world, in particular the International Declaration on Human Genetic Data adopted in October 2003[i] and the principles emerging from the UN’s unfinished work on the “Information Society” at the end of 2003.[ii]
We will return later to the safeguards.
I ask you to rush past the familiar categories in which information about us is nowadays collected, sifted, matched, traded, used and stored by the private sector and (often compulsorily under law) by the public sector. Commerce and government are assisted by information and communication technologies of increasing sophistication. We slough off data like skin, unnoticed and constantly. Someone usually vacuums it up. We have no time here to analyse the spread of surveillance in public places, assisted by smaller cameras of growing capacity to remember, to disseminate and even to draw inferences. To be sure, each development is important in its context ‑ yes, each context means costs, benefits, balancing, compromises ‑ but for present purposes, just note the extent of existing data collection about you. This data can augment the data that may be derived from our bodies by newer methods. Two of those newer methods are biometrics and genetics.
You will have seen biometrics in the movies, even if you have not experienced them yet at, say, airports. In future you are likely to undergo electronic scans of your iris or retina, finger or palm. Devices may scrutinise your face shape to try to match it with a database of photos. Systems may emerge to analyse and compare your gait or your unique body odour. Fail a biometric test and an alarm may sound, you may be asked to step out of a queue for questioning, gates may not admit you, dispensing machines may decline to serve you.
Part of each person’s DNA is unique, so DNA profiling has a range of uses, especially in law enforcement. Since the human genome was sequenced in 2000, our acquisition of genetic knowledge has accelerated. That knowledge is taking the form of a growing range of tests that may be made on samples from your body, including samples acquired surreptitiously, or for purposes completely unrelated to the particular tests that may be conducted. Part of your body may be “owned” by others.
How we collect samples, conduct tests, interpret and communicate results, and then act on our understanding of results, involves public policy issues of profound significance. The risk of a new slavery lies in this realm.
GENETIC KNOWLEDGE IS never neutral. Either I have a genetic pre-disposition to, say, Fatal Condition Z, or I do not. Either I have the genetic marker that has been associated with a character trait or type of behaviour – desirable or undesirable ‑ or I do not. To believe I know, either way, will affect my sense of self, and perhaps the perceptions of me held by others, most relevantly those who love me. It is from our intimates that we draw strength when sometimes they reassure us (we who are all frail and flawed) that they love us “just the way you are”. But what is that, genetically speaking? Who shall be empowered to try to find out, as the tests for this and that become available? In future, will the individual be any longer sovereign over the data extracted from his or her body? What will be the effect on a person’s legal rights and obligations of decisions made by others on the basis of genetic information about that person?
Should the individual remain sovereign? While part of your DNA is unique, a lot of it is shared by your blood relatives. Data from your body may be revealing of non-neutral information about them. In this sense, genetic privacy is communal. John Donne was right. No person is an island. Genetically speaking, we are each an archipelago. That fact has considerable implications for conceptions of the human rights that I referred to earlier as a source for the language of the new emancipation. Springing as its does from Western and from Enlightenment thinking, with the individual at the centre, the standard human rights vocabulary may need to be adapted to the complexities that our growing genetic knowledge reveals. We have something relevant to learn, perhaps, from cultures that have long placed emphasis on the family or the community rather than on the individual.
Much useful thinking is taking place, but so far it has not penetrated public debate very deeply. In 2003 the Australian Law Reform Commission, together with the Australian Health Ethics Committee, released its two-volume report Essentially Yours: The Protection of Human Genetic Information in Australia. During the long inquiry that led to the report, it was possible to discern the ALRC’s concern to raise awareness of the issues beyond a narrow band of specialists. Similar calls for broader discussion about the issues at stake were made by several of the world’s leading genetic scientists at the International Genetics Congress, held in Melbourne in July 2003. It is not clear why the issues have not yet produced a more cross-disciplinary debate in Australia. Generally speaking, it remains concentrated in medico-legal circles. Popular media treatment of the implications of growing genetic knowledge seems fixed mainly on the application of DNA profiling in law enforcement and criminal justice, either as a tool to implicate or as a way to challenge convictions. Until the scope of the challenges of fast-growing genetic knowledge is better appreciated – and, in particular, until it is less single-mindedly associated by generalists with “law and order” – it is unlikely to gain sustained attention from governments or political parties.
IT IS ALSO possible that the sensitivity of some dimensions of the issues explains the reluctance of public policy actors to debate possible responses. A sample from Essentially Yours illustrates the scale of the issues that are at stake: control and use of large collections of body samples taken in circumstances in which the genetic testing of today and tomorrow were never contemplated; reliability of DNA evidence in the criminal justice context; and genetic testing of parentage, in the workplace, for insurers, of non-offenders for policing purposes, of kinship or ethnicity in the context of immigration, and in matters involving indigenous Australians.
Some excerpts from the report in relation to law enforcement, immigration and Aboriginality indicate the complexity and the sensitivity of the issues. In relation to law enforcement, the report observed: “As DNA technology advances, new methods of analysis might allow forensic analysts to access increasing amounts of personal information about a person from a DNA sample. In future, there may be pressure to expand the scope of DNA analysis to include identification of physical and behavioural traits; or to expand the scope of persons subjected to testing to include particular community groups, all arrestees, all persons applying to enter Australia as tourists, immigrants, or asylum seekers, or even all Australians. The Inquiry believes that any future expansion of the use of this technology would necessitate community debate to strike an effective balance between individual privacy rights and the need for community protection from crime.” (paras 39, 59-60)
In relation to immigration the report also outlined the potential application of genetic testing for example of aslyum seekers and those seeking family reunions. “The Minister for Immigration and Multicultural and Indigenous Affairs has indicated that, in future, genetic testing might also be used (along with other biometric tests) to identify asylum seekers; to ensure that they do not already have protection elsewhere; and to ensure that they have not previously been refused refugee status by another country. The Inquiry understands that legislation for the use of biometric identification tests is currently under development. Early draft policies included the possibility of using genetic tests, but these tests have subsequently been excluded because they are slower than other biometric identification, such as photographs, fingerprints, and height and weight data. If, in the future, the Department of Immigration and Multicultural and Indigenous Affairs [DIMIA] wished to use genetic tests for identification purposes, it would clearly be desirable to ensure privacy protection for the personal information generated in the process.(para 37.3)
“The (department’s) Procedures Advice Manual notes that officers may only offer genetic testing; they do not have power to compel an applicant to undergo genetic testing. Although laboratories send results to applicants in some cases, test results are usually sent to DIMIA, which then informs the applicant of the results in writing, either directly or through an English-speaking sponsor. Generally, genetic testing for kinship is used to support applications, but on occasion DIMIA uses genetic testing where fraud is suspected, for example if the applicant and sponsor are thought to be siblings. Testing may also be used as evidence of child trafficking by demonstrating that a woman who is relinquishing a child to another person is not the biological parent of that child.” (para 37.13-14)
“At present, there is no specific backing for genetic kinship testing in migration decision making in either the Migration Act or Migration Regulations because DNA testing is not a legal requirement for the granting of a visa. The procedures for requesting and administering testing are covered only by departmental guidelines contained in the Procedures Advice Manual. This raises questions about the adequacy of protections afforded to applicants.”(para 37.36)
On Aboriginality, turn your mind to some of the possibilities that genetic testing could raise in a country with our history: “One of the most interesting outcomes of the Human Genome Project and other current scientific research is that there is no meaningful genetic or biological basis for the concept of ‘race’ … any two human beings are 99.9 per cent identical genetically. Within the remaining small band of variation, scientists estimate that there is an average genetic variation of 5 per cent between what are called ‘racial groups’ ‑ which means that 95 per cent of human genetic variation occurs within ‘racial groups’.” (para 36.41)
“In the final report of the Royal Commission into Aboriginal Deaths in Custody, Commissioner Elliott Johnston QC commented that: ‘How “Aboriginal” has been defined, and the qualities attributed to Aboriginal people, have varied over time and from place to place, in ways that can only be understood in terms of the local, national and international concerns of a European colony of settlement in the South Pacific. Declaring this or that individual person Aboriginal or not Aboriginal has been a political act, prompted often enough by administrative convenience or economic advantage, such as access to land or the control of cheap labour. Correspondingly, Aboriginal people have at times denied Aboriginal identity, as a strategy for evading official harassment or popular discrimination, and at other times claimed it as a means of improving their material or political circumstances.’ (para 36.6)
“The ALRC Inquiry remains sceptical about whether there is any proper role for genetic testing in determining Aboriginal identity, which is basically a social and cultural matter.”(para 36.5)
These and many of the other issues raised in the report are questions crying out for expansive, unemotional public debate. Although not immune from criticism, Essentially Yours is precisely the kind of analysis needed to nudge the public policy debates at federal, state and territory levels in Australia. In its methodical way, in its familiar vanilla-flavoured prose, the report demonstrates the significance of our growing genetic knowledge, the importance of facing up to what to do about existing collections of the population’s DNA, and the lack of adequate safeguards to avert readily identifiable risks.
To call our DNA our “fate map” is memorable, but very simplified, shorthand. The better view seems to be that, however pre-disposed; our genes interact with our environment in ways we do not yet understand.
Humility in the face of ignorance should guide policy-making. It is not so much valid science, but illusory scientific certainty that does the most damage. The ghastly history of eugenics in the 19th and 20th centuries is evidence enough.
TO TURN BRIEFLYto a distinction not often made in discussion of biometrics, genetics and privacy. One of the powerful drivers for collecting more data from bodies is the desire for commerce and government to be more secure. Concern about crime and terrorism is a commonly cited reason for introducing measures that erode privacy, especially since September 11, 2001. The balance between liberty and security is being recalibrated. I do not want to analyse that wider issue here, but rather to focus precisely on the distinction between authenticating a person and knowing his or her identity. Appreciating the distinction is part of getting the recalibration right.
I am a sack of skin with a fleshy computer in the round bit at the top.[iii] And so are you. And so is everyone you love. But I, you, they – all are more than sacks of skin. All have identities continually evolving. All have reputations comprised of how others perceive. All are vulnerable to how others perceive them.
For many practical reasons, we want to authenticate persons, or at least their particular sack of skin. And yet we want to preserve their human dignity, a component of which is the privacy we allow them, the secure zone for the creation and development of individual identity.
I know we are different, you and me. And you know it, too. When I think thoughts that I do not divulge; when inside I worry, doubt, judge, dismiss, agree, desire, dislike, reconsider, or thrill with recognition or understanding – when I do all these things and more, without necessarily any discernible sign from my sack of skin, then I am who I am. That is my identity. And when you do it that is your identity.
You are not the sum of your data. Not the data obtained from your sack of skin, your body, nor the data about what your body has done, where it has travelled, when it immigrated, where it shops, what it owns, how it labours.
We can authenticate a sack of skin by knowing, for example, when and where and by which other sack of skin it was born (birth certificate). Or by recording its distinguishing marks, whether acquired at conception (DNA) or developed naturally (iris, fingerprint, face shape) or acquired later (tattoo, piercing).
But we err if we think that by authenticating the particular sack we also identify the person. Identity, in the sense I am describing it, is selfhood, and it is marvellous as well as lonely. Authentication is the where and the what. Identity is the who and the why. It is to preserve the individuality and variety of the answers to those two questions – who and why – that we include respect for privacy among human rights and now safeguard it under law.
Another person can only know your identity better by degrees, depending on what you choose to let that person know. In their mind, your identity cannot be what it is in your own mind. By degrees, through intimacy, with trust, you risk that they will understand more about your identity, your private self.
In all this, privacy and dignity are elemental. When we turn to the science, which in genetics is beautiful, let us not undervalue privacy and dignity. When we trial the technologies, which in biometrics seem so efficient, we must be careful not to undervalue privacy and dignity.
If we begin by acknowledging the complexity of the phrase “the authentication of identity”, then we have a much better chance of successfully answering in practical ways that deceptively simple question: “Got any ID?”
BACK TO SAFEGUARDS. Genetic knowledge promises great benefits. Neither Cassandra nor Ludd ought we be. The methods adopted to try to extract the benefits will need to be accompanied by safeguards, tailored for specific contexts. Broadly, they will include lawful authority, independent oversight and transparency. Measures that have the potential to erode human sovereignty and dignity should always be expressly authorised by law for limited and express purposes, openly debated and enacted, typically, with automatic sunset/review/reconsider clauses. Science and the market always outpace law. Automatic sunset and review clauses ensure that law gets the periodic attention it needs. Also important will be oversight by entities that are designed, empowered and equipped to draw on the expertise of specialists, but to avoid being captured by them.
Transparency will matter most. In this field, more than most, it will be useful to apply to any proposal the time-honoured test: if this were reported on the front page of tomorrow’s newspaper, how would you justify it? Today’s public policy makers cannot be expected to “solve” the issues that genetic knowledge will create. But the future will judge them on whether they treat genetic data commensurately with its power.
[i] Adopted unanimously at UNESCO 32nd General Conference, Paris, October 2003.
[ii] Adopted December 12, 2003, World Summit on the Information Society, Geneva 2003-Tunis 2005, UNESCO Document WSIS-03/GENEVA/DOC/4-E.
[iii] A phrase from a work of science I cannot now locate (failure of memory in fleshy computer). Acknowledgement and apologies to the author.
More from this edition
MemoirONE THE DAY of my birth, Boxing Day, 1921, something seemed wrong in the small rented brick house in the lower-middle-class Sydney suburb of...
Memoir"TAKE UP GOLF," they said. Both of them within the space of a week. The acupuncturist and the alternative healer. It was not the...
ReviewSCIENTIFICALLY ADVANCED NATIONS seem on the verge of a new situation in which the traditional goals of doctors and others concerned with health care...