Genomics and identity: the bioinformatisation of human life

Abstract

The genomics ''revolution'' is spreading. Originating in the molecular life sciences, it initially affected a number of biomedical research fields such as cancer genomics and clinical genetics. Now, however, a new ''wave'' of genomic bioinformation is transforming a widening array of disciplines, including those that address the social, historical and cultural dimensions of human life. Increasingly, bioinformation is affecting ''human sciences'' such as psychiatry, psychology, brain research, behavioural research (''behavioural genomics''), but also anthropology and archaeology (''bioarchaeology''). Thus, bioinformatics is having an impact on how we define and understand ourselves, how identities are formed and constituted, and, finally, on how we (on the basis of these redefined identities) assess and address some of the more concrete societal issues involved in genomics governance in various settings. This article explores how genomics and bioinformation, by influencing research agendas in the human sciences and the humanities, are affecting our self-image, our identity, the way we see ourselves. The impact of bioinformation on self-understanding will be assessed on three levels: (1) the collective level (the impact of comparative genomics on our understanding of human beings as a species), (2) the individual level (the impact of behavioural genomics on our understanding of ourselves as individuals), and (3) the genealogical level (the impact of population genomics on our understanding of human history, notably early human history). This threefold impact will be assessed from two seemingly incompatible philosophical perspectives, namely a ''humanistic'' perspective (represented in this article by Francis Fukuyama) and a ''post-humanistic'' one (represented by Peter Sloterdijk). On the basis of this analysis it will be concluded that, rather than focussing on human ''enhancement'' by adding or deleting genes, genome-oriented practices of the Self will focus on using genomics information in the context of identity-formation. Genomic bioinformation will increasingly be built into our self-images and used in order to tailor and adapt our practices of Self to our ''personalised'' genome. We will keep working on ourselves, no doubt, not by modifying our genomes, but rather by fine-tuning our behaviour. What we are experiencing is a bioinformatisation of the life-world. Genomics-based technologies will increasingly pervade our daily lives, our autobiographies and narratives, as well as our anthropologies, rather than our genomes as such.

Power to the people: a wiki-governance model for biobanks

“…If 'the relational, open and global nature of modern science is leading to more devolved regulatory approaches' [65], and if the success of a biobank depends on an effective 'strategy for patterning a network of interaction' [23], paladins of participatory democracy should view wiki-governance as a promising avenue. Indeed, we think it can spawn new biosocial group identities [66,67] and lead to the establishment of biobanks from the bottom up, by citizens rightfully envisioning themselves as co-creators of genomic science and policy. At a minimum, wiki-governance would be a welcome application of biobankers' fundamental socio-ethical aspirations of public understanding, engagement and motivation, trust, transparency and open dialogue, thus simultaneously promoting scientific aspirations of successful translational research.…”

“…Despite the uncharted territory, a Massachusetts state legislator agreed to propose a bill on net neutrality on LexPop for the site's users to draft [66]. …”

The obliteration of life: depersonalization and disembodiment in the terabyte era

“…Yet, the "factor X" (the unique human genetic "essence") was never found. At face value, there is nothing remarkable or special about the human genome (Zwart 2009). Rather, as a quasi-artistic "portrait", the typical output of DNA sequencing machines (displayed in the above figure) conveys a sense of hyper-modernistic anonymization.…”

'Fault' genes and false needs? A critical review on the direct-to-consumer marketing of genetic tests

“…For example, the website of 23andMe (23andMe, 2015) suggests to customers that learning more about their DNA can help them to make "better lifestyle choices" and similarly Gene by Gene (GenebyGene, 2015) promises to provide "unparalleled insights" to their customers for well-informed decision-making. As Zwart (2009) argues the unlimited information and promise to more 'choice' and 'freedom' stemming from the field of behavioural genomics and bio-information prompts consumers to view their self-images via the lens of genetic information which exhorts both an adaptation of their everyday (consumption) practices and changing behaviors. Thereupon, the promotional rhetoric employed by DTC companies presents the choice of accessing genetic information as an act which can help the consumer to embrace the emergence of a new genetic identity and self who is better informed regarding lifestyle decisions and the risks related to the future.…”