The 'Persons' and 'Genomics' of Personal Genomics

Jenny Reardon

Disclosures

Personalized Medicine. 2011;8(1):95-107. 

In This Article

Abstract and Introduction

Abstract

At stake in the debate about personal genomics is what kind of person can be trusted to interpret genomes. Deciding this hinges not just on determining if consumers can interpret genomic information, but on deciding which biological and medical experts (if any) can perform these interpretive acts. Understanding why personal genomics has generated such tension and attention requires bringing these struggles, over who can interpret 'the code of life', into focus. While debates about personal genomics focus largely on relatively narrow issues of fraud and deception, this emerging new scientific and political terrain poses more fundamental questions about how the study of biological life, as well as the organization of democratic life, should proceed in genomic times.

Introduction

Since DeCodeMe (Reykjavík, Iceland), 23andMe (CA, USA), Navigenics (CA, USA) and Pathway Genomics (CA, USA) opened their doors beginning in 2007, direct-to-consumer (DTC) personal genomic services have sparked fears, among academics and public officials alike, that the new field of personal genomics (PG) endangers both the integrity of science and the rights of citizens.[1–3] Worry about DTC genomics first took the national stage in 2006 when the US Federal Trade Commission published a report warning consumers that some 'at-home' genetic tests lacked scientific validity.[101] In that same year, Gordon H Smith, chairman of the Congressional Committee that oversaw the 2006 hearing on home DNA testing, called DTC genetic testing 'modern-day snake oil'.[4] While many attempt to distinguish PG from the mostly 'nutrigenomics' companies reviewed in 2006, PG companies have raised similar concerns. Just this year, Representative Bob Latta dubbed genomic DTC companies, including PG companies, the 'snake oil salesmen' of the 'high-tech community.' Representative Latta joined other members of the Committee on Energy and Commerce's Subcommittee on Oversight and Investigations in his assessment that DTC personal genetic testing posed serious threats to consumers.[102]

Although such critiques may be prudent, I suggest that framing PG as a dangerous corruption of science and a violation of democratic rights misses most of what is interesting and important about this rapidly emerging new terrain of science and governance. Rather than threatening the integrity of scientific or democratic practice, through yoking the locus of agency in liberal democracies – the 'person' – to the locus of agency in the life sciences – genomes – PG has created a potent zone for biosocial formation.[5] It is a zone where much is at stake – both for how we conduct scientific explorations of life and for how we order and govern democratic polities in an age increasingly mediated by the genome sciences.

In order to bring into focus these more fundamental issues, and frame what I hope will be more productive discussions and debates about this new field, in this article I focus my attention on efforts to construct the person and the 'genomics' of PG. While the focus of US regulatory bodies and mainstream news reporters has been on the person of the consumer and the corruption of an already formed objective genomics, I argue that this nascent industry has generated such attention and tension because it raises more fundamental questions about a broader range of persons and genomics. What kind of genomics (if any) can form the basis of a human science with the power to create important new biological and medical knowledge? What kind of person can participate in the production of genomics, and in the forms of bodily self-governance needed to benefit from it?

To answer these questions, I draw upon a 2-year ethnographic study in which I conducted fieldwork at two PG companies and interviewed key players in the formation of PG companies as well as academic scientists working in related fields. These data allow me to trace the emergence of the figure of the person in genomics. I argue that this figure was not forced into the space of genomics by suspect commercial forces; rather, genome scientists played a central role in constructing this person as they sought the research subjects needed to transform genomics from a set of novel scientific tools to a proper human science. Persons were not brought in because genomics had become a solid body of knowledge with a product ready to sell to them, but because to become a human science, genomics needed access to human beings and their genomes.

These could not be any old human beings, but rather ones that could be secured as liberated and free, and not subject to scientific exploitation. The figure of the person crafted in liberal democratic theory – a rational person capable of self-governance through access to knowledge – appeared to offer up such free persons. However, just as genomics offered no solid already established body of knowledge ready to be consumed, political theory offered no already formed concept of what constituted a free person capable of using genomic knowledge. Instead, in order to form, PG initiatives needed to at once constitute genomics and persons that could work together.

It should not be a surprise that this proved a complicated task. To be successful, it required negotiating answers to questions not just about whether consumers were capable of making sense of genomic information, but questions that preceded PG about what kinds of persons had the skills to interpret genomic information, and about the kind of thing genomics might be. The paper presents the possible persons – early adopter, impersonal objective scientist and connoisseur – and genomics – new web application, objective human science and curated consumer product – that have to date been put forward by PG practitioners. My goal is to demonstrate that the tensions currently surrounding PG will not be resolved if regulators and scientists continue to presume that there are already established persons and genomics to which PG should be made to conform, for this is exactly what is at stake. PG has hit a nerve not just because it raises questions about fraud and corporate responsibility, but because it raises more fundamental questions about the nature of biological and medical expertise and the constitution of free persons in an age where we expect genomics to be meaningful, both in democratic polities and the life sciences.

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