‘Ethics, Justice And Knowledge After The Genome’

Lessons from Professor J. Reardon’s The Postgenomic Condition (2017)

Bobbie Dousa
January 24, 2020
February 10, 2020

At the dawn of the new millennium, former US president, Bill Clinton, voiced the jubilation of scientists, investors, and governmental bodies alike in heralding the achievements of the Human Genome Project as ‘the most important, most wondrous map ever produced by humankind’. At long last, the sequencing of the human genome, composed of over three billion nucleotides, put forward the promise of life itself made legible. Yet, over the ensuing decade, the very lucidity and meaning of the human genome, the so-professed ‘book of life’, receded from the grasps of the aforementioned agents. A key question persisted: how are we to determine the use, significance, and value of the human genome?

Jenny Reardon, professor of sociology and the director of the Science and Justice Research Center at the University of California, Santa Cruz, maintains that a fundamental task of interpretation has since oriented genomics. Reardon’s latest book, The Postgenomic Condition: Ethics, Justice & Knowledge After the Genome, charts a series of public and private efforts in the wake of the completion of the Human Genome Project (HGP) to produce meaningful knowledge about genomics. The inaugurating decade of the twenty-first century birthed a contemporary milieu in which biotechnology, venture capital, and informatics increasingly and inextricably cohere. Consequently, Reardon contends, ‘the value of knowing the sequence of the human genome turned out to be far from obvious, even to leading genome scientists’. In the years since the HGP, many fear that ‘genomics has given rise to a ‘deluge of data’ rather than ‘meaningful knowledge about life itself’. In this context, Reardon argues, scientists, health organisations, and national governments turned to liberal democratic principles in attempt to make sense of the genome. Through a focus on the development of genomics after the HGP — an era contoured by the rise of bioinformatic capital — , Reardon investigates ‘the role of science and technology in augmenting or undermining conditions for life, thought, and politics’.-

Reardon’s argument unfolds chronologically with each chapter delineating how a series of central tenets in liberal democracy were leveraged over the decade to bolster genomics initiatives. Reardon identifies these salient principles of ‘postgenomics’ as: ‘information, inclusion, the people, persons, property, privacy, and public’. Reardon examines public and private genomics initiatives that stretched the globe — from Tuskegee, Alabama to Edinburgh, Scotland to Ibadan, Nigeria to Silicon Valley. Designed to derive meaning and use from the genome, Reardon describes how these efforts — such as the International HapMap Project, Generation Scotland, 23andMe’s 23andWe, and the Personal Genome Project — exposed the very limits of liberal democratic values.

To illustrate, in a chapter centered on the liberal democratic value of inclusion, Reardon details the process and results of the Communities of Color and Genetics Policy Project (CCGPP, 1999–2000). The CCGPP was a federally funded genetics initiative at the historically Black, Tuskegee University. Conscious of the woeful underrepresentation of African Americans in genetics and genomics research, the CCGPP aimed to study how to approach, recruit, and involve members of the local Black community in leading-edge research. Significantly, the university center in which this project was housed was founded through federal funding lately offered in atonement for the abhorrent and hideously unethical, Tuskegee syphilis study.

In Tuskegee, where the poverty rate remained over 50 percent and the town without a hospital or indeed, any kind of acute care facility, CCGPP researchers found that many in the community had little desire to be involved in the project. CCGPP researchers explained in interviews with Reardon that ‘African American people are not opposed to research’ but are however, ‘against research that might harm them’ and thus, ‘they wanted to know what the possible harms and benefits might be, something the supposed experts had not done a good job of explaining’. In challenging the inherent value of being included in genetics research, the people of Tuskegee raised incisive concerns about both how genomics research might uphold the principle of informed consent and how to ensure that research meets the needs of the people.

Confronting the inadequacies of a liberal politics of mere inclusion, Reardon asks: ‘Should funding for genomic research, the benefits of which are unlikely to accrue to those with no or limited healthcare, be tied to requirements for basic health care? Who benefits from genomics research today, and on what basis can others be promised benefits in the future?’

Professor Jenny Reardon

For Reardon, a decade’s worth of public and private initiatives after the Human Genome Project could offer only equivocal answers about how, and for whom, does genomics constitute a thing of value. In The Postgenomic Condition, Reardon concludes that the tenacious predicament of producing meaningful knowledge from genomes that characterizes genomic endeavors in government and industry today ‘arises from an overly narrow biotechnocratic understanding of life, health, hope, democracy, and the future that eclipses the broader needs of people and the planet’.

Reardon insists that genomics initiatives going forward must prioritize the lessons already gleaned from past efforts in postgenomics as well as from the insights gathered by ongoing social science and bioethics research. According to Reardon, we stand ‘in a moment when information proliferates beyond most citizens — and indeed, most scientists — capacities to understand its meaning’. As a plurality, Reardon urges us to consider:

‘What principles and practices constitute just governance when the central pillars of liberal democracies — access to information and participation — generate the labor and raw materials for twenty-first-century bioinformatic capitalism?’

In Reardon’s analysis, some key and actionable mandates have already emerged. Against the dominant ‘convergence of the ethos of open source with market logics’, citizens from Scotland to San Francisco have asserted their desire to retain at least some control over their bodily tissues and data. Medical providers, biomedical scientists, and citizens continue to insist on retaining their autonomy to determine the use of their DNA and other bodily data for some research purposes and not others. Second, across the stratifications of socioeconomic status and geopolitical location, citizens want information about ‘who will benefit from genomics and informatic approaches to biomedicine and healthcare’. Citizens asked to participate in genomics research demand to know ‘not just who will receive medical treatments, but which persons and institutions will receive the jobs, the profits, research, and recognition created by considerable public and private investments in genomics and bioinformatics.’

The Postgenomic Condition reveals the urgency that belies the need for bioinformatic and technological endeavors that foremost attend to people’s fundamental needs with robust and structural approaches. Central to this, Reardon stipulates, is the creation of political frameworks —beyond those afforded by liberal democratic precedent — that will allow for meaningful debate and examination of what research must address, how it should be enacted, what its effects might entail, and how its benefits might be shared.

The Postgenomic Condition makes evident that the decisions we make now as we develop the field of genomics hold a solemn magnitude — they will continue to shape and direct the meaning of (global) health, personal information, and biomedicine for decades to come. Our decisions and indeed, our research choices, stand as a reflection of our values. Reardon enjoins us in a final plea:

‘It is critical that we make visible how money flows, buildings are built, resources are allocated, research priorities are set, and energy consumed as Fortune 500 companies and universities invest in information about our bodies and genomes as the route to health and justice in the twenty-first century’.

  • Written by Roberta Dousa, researcher at CCG.ai
  • Edited by Belle Taylor, Strategic Communications and Partnerships Manager at CCG.ai

Reference consulted:

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