The dangers of ‘genetic essentialism’

3.64 Aldous Huxley’s Brave New World, which was published in 1932, was one of the first cultural responses to the fascination with eugenics as a modernist principle for using science to improve society and social organisation.^[57] In light of recent scientific advances, popular culture is again beginning to consider the chilling vision of a society organised around genetic determinism in films such as ‘GATTACA’.^[58]

3.65 ‘Genetic essentialism’ is a reductionist view of human beings as essentially consisting of their genes,^[59] with human worth describable in the language of genetics. It is closely associated with ‘genetic determinism’—the belief that human health and behaviour are basically predetermined by, and co-extensive with, a person’s genetic make-up. That is

personal traits are predictable and permanent, determined at conception, ‘hard-wired’ into the human constitution . [T]his ideology minimizes the importance of social context.^[60]

3.66 One of the discoverers of the DNA double helix, Nobel Prize winner Dr James Watson, famously has said that ‘[w]e used to think our future was in the stars. Now we know it is in our genes’. The widespread use of genetic information to identify individuals or groups at risk for disease or harm from a work environment; to guide provision of social benefits or services; or to classify people in any way, may challenge or change the way we think about what it means to be human.

3.67 As a society, will we come to measure the worth of a person by his or her genetic status? Will we come to regard all illness and even behaviour and preferences (political, sexual, cultural, aesthetic) as genetically predetermined? Will we come to view some gene-linked behavioural traits (obesity, smoking, drug and alcohol dependence) with more sympathy, in the same way that we now avoid attributing fault to, and stigmatising, persons with other genetic disorders?^[61] If so, will this challenge the fundamental ideas upon which civil society and the legal system are built, which emphasise free will, autonomy, and individual moral, social and criminal responsibility?^[62]

3.68 The Office of the Federal Privacy Commissioner submitted that advances in genetic science

should not override the fact that, as human beings, we have the unique capacity to make rational decisions about our lives. This means that the greatest human right is the freedom to choose. Even if our understanding of the interaction of the determining factors were to improve enormously, except where social considerations require it (for example, the lawful prevention of harms to others), the existence of a free society presumes that the individual is free to choose.

Especially where that choice involves our own bodies and destinies, the voluntary nature of our decision-making excludes reliance on the concept that our lives and well-being are pre-determined genetically. To hold otherwise is to render an exercise of an individual’s free will in a democratic society as a meaningless practice. With that freedom to choose, there comes the social recognition of the need for people to take responsibility for their decisions, which could otherwise be evaded by pleading genetic pre-determinism. The consequences of the latter, for example, in the criminal justice system, are unthinkable.^[63]

3.69 Murray has warned that

genetic risks may come to be seen as the explanation for complex multifactorial diseases. They may also be seen as fundamental, defining characteristics of the persons who have such risks, essentially reducing those persons to their genetic propensities. … we do not have to pretend that genes are unimportant to avoid determinism or reductionism. We should give genes their due, but no more than that.^[64]

… there is a vicious circularity in insisting that genetic information is different and must be given special treatment. The more we repeat that genetic information is fundamentally unlike other kinds of medical information, the more support we implicitly provide for genetic determinism, for the notion that genetics exerts special power over our lives.^[65]

3.70 Ridley has cautioned against adopting a crude dichotomy that equates genetic influences with ‘determinism’, and environmental influences with ‘freedom’.

There has been a long tradition among a certain kind of science writer to say that the world of biology is divided into people who believe in genetic determinism and people who believe in freedom. Yet these same writers have rejected genetic determinism only by establishing other forms of biological determinism in its place—the determinism of parental influence or social conditioning. It is odd that so many writers who defend human dignity against the tyranny of our genes seem happy to accept the tyranny of our surroundings. … The crude distinction between genes as implacable programmers of a Calvinist predestination and the environment as the home of liberal free will is a fallacy.^[66]

3.71 A number of serious concerns may be raised about the social consequences of adopting or internalising the tenets of genetic essentialism, even where this is borne of optimism for the benefits of medical and scientific advances. For example, an over-concentration of research into the field of genetics could lead to neglect of the effects on human health of other factors, such as the physical, social, spiritual and economic environments in which people live.^[67]

3.72 Many communities in Australia have close family and cultural links and are aware of their origins and heritage. Nelkin and Lindee have cautioned against supplanting human identity and relationships with molecular biology.

As the science of genetics has moved from the laboratory to mass culture, from professional journals to the television screen, the gene has been transformed. Instead of a piece of hereditary information, it has become the key to human relationships and the basis of family cohesion. Instead of a string of purines and pyrimidines, it has become the essence of identity and the source of social difference. Instead of an important molecule, it has become the secular equivalent of the human soul.^[68]

3.73 In Chapter 36, the Inquiry notes that there have already been disputes in some Aboriginal communities about the use of genetic testing to confirm or deny kinship relations—and thus to determine Aboriginality. A prominent example was the use of genetic testing to assist in determining eligibility to vote in the Aboriginal and Torres Strait Islander Commission regional elections in Tasmania in 2002.

3.74 Current attitudes of social solidarity could be threatened by genetic essentialism. For example, an expectation could develop that those with genetic susceptibilities, or those at risk of having children with a genetic disorder, should take financial responsibility for their own and their affected children’s health care.^[69]

3.75 As discussed in Chapter 23, there is a clear need for much more public and professional education about genetics, and the sensible application of genetic information within a range of important contexts.

3.76 The submission from Queensland Advocacy Inc summarises very well the social forces and tensions involved:

Genetic determinism is not necessarily a belief in a causal world in which only genes have a determining effect on human health and behaviour. It could rather be the belief that the world is best served through emphasising the role of genes and seeking to order life accordingly. …

The most important response to the state of affairs in which this does occur, is to create opportunities for greater public involvement in the cycles of construction, deconstruction and reconstruction of genetic information. Human genetic information is ultimately, not about genes; it is about people. The information, because it originates in language and social practices, can be used in two ways. Either it can be regarded as private, which centres power in professions and individuals, or it can be regarded as public, which places power back into the community. The responsibilities created by either response are enormous. On either side lie distinctly undesirable prospects—enormous professional and corporate power or overwhelming public apathy—and the future may be charted through one of these factors ensuring that the other occurs. The task of ethics, including this inquiry, is to work against either occurring.^[70]

3.77 The challenge for our society is to maintain its moral and ethical compass, supporting those aspects of genetic science that reduce pain and suffering and increase the quality of life, while firmly resisting the perverse use of genetic information in a way that diminishes personal freedom and responsibility, and creates new opportunities for unfair discrimination.