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Keywords:

  • Human Genome Project (HGP);
  • ethical;
  • legal and social implications (ELSIs);
  • mass media;
  • UK newspaper coverage;
  • human genetics

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Science, medicine and human genetics in the mass media
  5. The optimistic future of post-genomic medicine
  6. The pessimistic vision of post-genomic society
  7. The incomplete ‘dialogue’ of hope and fear
  8. Discussion and conclusion
  9. Acknowledgements
  10. References

On the 26 June 2000 the teams involved in mapping the human genome announced to the world's media that they had completed the ‘first draft’. This paper is a content analysis of UK press coverage of the announcement, particularly of the ethical, legal and social implications (ELSIs) contained therein. Widespread and highly visible coverage of the completion of the Human Genome Project (HGP) was characterised by press ambivalence towards, on the one hand, the optimistic future of post-genomic medicine and, on the other hand, the pessimistic vision of post-genomic society. Coverage of the positive medical implications characteristically echoed the exuberance felt by the champions of human genetic research, focusing on longevity and a cure for cancer. Articles on ELSIs either repeated long-standing concerns about genetic discrimination and the redesign of human life, or introduced more novel topics such as the commercialisation of genetic science, genetic determinism and ‘living forever’. Press reports on the more novel ELSIs addressed the political and economic context of the science, its ‘social value’ and its complexity, issues that have often been lacking in media coverage of human genetics. However, as a contribution to public awareness and policy frameworks surrounding human genetic science, press coverage was deficient in important respects. The HGP's proponents were the press's key source of information about its ELSIs. Journalists addressed only a limited number of ELSIs, focusing on issues that were ‘manageable’ by regulation or legislation rather than concerns such as risk, clinical utility or opportunity costs. Furthermore, those articles that addressed the more novel concerns were often presented using sensationalist news values. As a media representation of science, coverage of the ‘first draft’ in the UK press demonstrated both ‘source dependence’ and a bias toward the legitimacy of science, although the coverage of the more novel ELSIs indicated some mistrust toward scientific governance.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Science, medicine and human genetics in the mass media
  5. The optimistic future of post-genomic medicine
  6. The pessimistic vision of post-genomic society
  7. The incomplete ‘dialogue’ of hope and fear
  8. Discussion and conclusion
  9. Acknowledgements
  10. References

One hundred and seventy seven days into the third millennium, elite politicians and scientists announced the advent of the post-genomic era to the global media. The scientists who had mapped the human genome claimed they could now use genetic information to predict illness, prolong life and eradicate the scourge of cancer. Most journalists eagerly reported these hopes and some even suggested that genetic science would enable us to ‘live forever’. A few commentators, however, wryly reflected that they did not relish the prospect of interminable old age, while other reporters questioned the social, psychological and economic costs of pursuing longevity. Such ambivalence was characteristic of the press response to the unveiling of the human genome. What follows is a content analysis of UK newspaper coverage surrounding the ‘first draft’ of a map of the human genome, particularly the attention given to its ethical, legal and social implications (henceforth ELSIs). Drawing on the findings, this paper will engage in debates about ‘critical’ engagement and ‘ideological bias’ in mass media coverage of science and, more particularly, the framing of public and policy debate about human genetics.

In its early stages, the Human Genome Project (henceforth HGP) received relatively little, albeit ever-increasing, attention in the press (Durant, Hansen and Bauer 1996: 241–2). During the 1990s human genetics more generally was failing to attract the notice of the UK media (Kitzinger and Reilly 1997: 323). Kitzinger and Reilly (1997) predicted, however, that media coverage of human genetics would become prominent once a ‘real event’ galvanised scientific and political sources. One such event was the announcement on Monday 26 June 2000 of the impending completion of the HGP. The Sanger Centre in Cambridge, a research laboratory where part of the genome mapping occurred, issued news releases announcing the ‘first draft of the book of humankind’. The dawning of the post-genomic era was heralded in simultaneous, video-linked press conferences in Washington and London, involving Prime Minister Blair, President Clinton and a host of leading public and private sector scientists. A peak of UK newspaper interest occurred on the 27 June 2000 as journalists drew on the news conference and the news releases (Nerlich, Dingwall and Clarke 2002) to produce widespread and highly visible coverage about the ‘first draft’.

The analysis that follows is based on a two-week sub-sample extracted from an archive of all press reports of human genetic research during the year 2000, collected for The Wellcome Trust's ‘Media coverage of social and ethical implications of the new genetics’ project. The sample consisted of all national UK press, i.e. The Guardian, The Independent, The Daily Telegraph, The Times, The Financial Times and their weekend counterparts (categorised as ‘broadsheet’), and the Daily Mail, Daily Express, Daily Star, The Sun, The Mirror and their weekend counterparts (categorised as ‘tabloid’). These were monitored for two weeks, i.e. Monday 19 June to Sunday 2 July 2000, to encompass both ‘build-up’ coverage and subsequent comment. From the total of 146 articles collected1, 28 were excluded, as either related to genetics events other than the ‘first draft’ (21), or for using the ‘first draft’ as a hook onto an unrelated piece (7). The remaining 118 articles (n) are the evidence used in this paper. A database was assembled by coding each article according to its date, headline, author, author specialism, format, page/section description, story lead, number and type of images, mention of medical benefit or risk and types of ELSI. The research team drafted a coding frame for the substantive categories, such as ‘story lead’ and ‘types of ELSI’, by reviewing the year 2000 press archive to identify relevant issues and variables. The validity of these coding categories was tested independently by five researchers using a sub-sample of 100 articles that were selected to represent the diversity within the archive. After further discussion, a refined coding frame was agreed and a detailed, 17-page guidance manual was written to ensure consistent practice. The following analysis of the press coverage surrounding the ‘first draft’ announcement reveals how newspapers addressed both the ‘optimistic vision of post-genomic medicine’ and the ‘pessimistic vision of post-genomic society’. It also shows, however, that the proponents of the HGP shaped coverage of its ELSIs and that as a result the UK press presented an ‘incomplete dialogue of hope and fear’.

Science, medicine and human genetics in the mass media

  1. Top of page
  2. Abstract
  3. Introduction
  4. Science, medicine and human genetics in the mass media
  5. The optimistic future of post-genomic medicine
  6. The pessimistic vision of post-genomic society
  7. The incomplete ‘dialogue’ of hope and fear
  8. Discussion and conclusion
  9. Acknowledgements
  10. References

The domains of science, politics and mass media converged at the culmination of the HGP. The ‘first draft’ news event created a space that was co-occupied by powerful actors whose aims and practices did not necessarily correspond. This case study will revisit two of the questions common to research on the interrelations between scientists, journalists and policy makers, namely, does coverage show evidence of reporters ‘critically’ engaging with the materials given to them by their ‘sources’, and to what extent is coverage ‘ideologically biased’? Previous studies have shown an ambiguous relationship between journalists and scientists. Some media presentations of science demonstrate symbiosis, understanding and even collusion, while others show animosity, misunderstanding and mismatched agendas (Goodfield 1981, Dunwoody 1986, Nelkin 1987, La Follette 1982, Weatherall 1996). It has been argued that overly positive press articles result from ‘source-dependent’ journalism, while wildly negative stories are inspired by sensationalist news values (Nelkin 1987: 173–74). The implication is that the practice and values of media professionals can cause science to be reported uncritically. This uncritical coverage can have ‘ideological’ implications. It has been argued that the credibility and authority of science is underpinned by media coverage that lacks social context or that glamorizes and misrepresents the ‘true’ picture of scientific enterprise (Gardener and Young 1981, La Follette 1982, Nelkin 1985, Collins 1987, Singer 1990). A privileged and positive presentation of science that reinforces its legitimacy is alleged to serve the interests of the political, scientific and economic elite (Hornig 1990, Dornan 1990). Certainly, scientists in the public and private sectors, and their respective co-ordinators and financiers, employ strategies to manage science's public image (Nelkin 1985, 1987, Goodell 1986). Favourable media coverage can help them to create preferable policy agendas, encourage further funding, instil market confidence, foster public acceptance and establish or enhance professional reputations. News management techniques are thus employed to evoke enthusiasm (Nelkin 2001) or to anticipate and deflect possible criticism (Nerlich, Dingwall and Clarke 2002). This paper will assess the extent to which newspaper presentations of the ‘first draft’ uncritically reflected the views of those who promoted the legitimacy of the HGP.

Fuelled by a public demand for positive medical news (Nelkin 1985), media coverage of science is dominated by medicine (Krieghbaum 1967, Hansen and Dickinson 1992, Bauer 1998). Medical science is a deeply embedded social institution that has widespread political support and cultural legitimacy; news reports that contain assumptions supportive of medicine can contribute to this climate of social acceptance (Nelkin 1987). Biomedical communities have, nevertheless, become particularly concerned about coverage that questions the credibility of their science (Nelkin 1996). Like other scientists, they have an ambiguous relationship with mass media (Shuchman and Wilkes 1997) and seek to control the language and content of news to help maintain their legitimacy and autonomy (Nelkin 1985, 2001). Coverage of ‘personalised ethical issues’ is evidence that news media coverage of medical science is not ‘dominated by complacent acceptance’ (Jones, Connell and Meadows 1978: 4–5). However, simplistic portrayals of the perilous affects of medical applications can retain a deference to scientific expertise (Nelkin 1985). When analysing the nature of ‘critical’ coverage it is clearly important to consider the extent and content of ‘negative’ stories. Accordingly, this paper will evaluate the range of ELSIs addressed in newspaper articles on the ‘first draft’, and will explore the influence of the HGP's proponents on the ostensibly ‘critical’ coverage.

Given the resources invested in human genetic science, powerful political, economic and scientific actors have an interest in shaping its media profile, especially after the UK press reported and amplified criticisms of genetic science in agriculture. Reporting of human genetics has often echoed the views of science professionals and their supporters among the political elite (Cunningham-Burley, Amos and Kerr 1998, Conrad 1999b, Nelkin 2001, Nerlich, Dingwall and Clarke 2002). For leading scientists and politicians, the pertinent social and ethical implications of human genetics are those that can be addressed by research regulation and/or legislation against possibilities of genetic discrimination (Watson 1993, Warnock 1993). From this perspective, social dilemmas raised by ‘scientific progress’ can be resolved by using governance that reshapes society to accommodate new technology. This viewpoint, however, can conceal the interplay between scientific research priorities and political and economic agendas. Concerns about this ‘ideological’ influence on the ELSIs agenda have coalesced in questions about social value and risk. People concerned with the social value of human genetic science question its ability to deliver the promised medical outcomes, the extent to which it is a ‘manufactured need’ and the opportunity costs involved in pursuing a genomic research agenda (e.g.Stone 1991, Lippman 1994, Shakespeare 1999). Further, dissent exists about the reliability, safety and risks of medical interventions based on genetic knowledge that is, after all, in its infancy. Given the ‘ideological bias’ of the proponents of human genetic science and their influence on media coverage, some research has suggested that limitations have been placed on public perception and policy frameworks. Concerns about public awareness have stimulated questions about the accuracy and tone of newspaper presentations and how these influence the audience's perception of human genetics (Nelkin and Lindee 1995). Disquiet about the form and boundaries of policy agendas have aroused interest in how press coverage frames the social problems associated with human genetics (Conrad 1997). To contextualise the findings of this case study, it is necessary to further assess the existing research on media coverage of human genetics.

In the 1990s, the concept of ‘geneticisation’ dominated sociological debate about the impact of genetics on society. Ideas about determinism, essentialism and fatalism conveyed the fear that genetic explanations were being privileged over social, cultural and environmental factors, while human characteristics and behaviour were being reduced to genetic causality (e.g.Duster 1990, Lippman 1992, 1994, Wilkie 1994, Hubbard and Wald 1997). Mass media portrayals of human genetics were heavily criticised for accepting and conveying geneticisation (Nelkin and Lindee 1995, Conrad 1999a). In Nelkin and Lindee's (1995) argument that genes have become icons of popular culture, media oversimplification was seen to draw on biological reductionism and allegedly reproduce stigmatisation and discrimination. Conrad (1999a) has argued that ‘a false sense of continuous genetic discovery’ in the mass media had created a popular and understandable ‘mirage’ that underplayed the complexity of both susceptibility and social/environment influences and further, contributed to genetic essentialism and fatalism (1999a: 237–9). These critiques, however, conflate key facets of the debate. They suggest that geneticisation is conveyed to the audience when media content either simplifies causality or concentrates on positive medical hopes. As this research is purely a study of content, not audience understanding, it is necessary to tease apart these three facets: positive/negative coverage, simple/complex coverage and the meanings conveyed to the audience.

Although it is not the focus of this research, it is necessary to address ‘meaning’ so as to distinguish it from ‘content’. Aside from issues of public awareness and policy framing, the impact of media coverage of human genetics is important because it can affect people living with genetic disease by raising and dashing their hopes or influencing their medical and reproductive choices (Stockdale 1999: 82). Studies of the ‘meaning’ conveyed by media messages are often the realm of empirical research into audience reception. In human genetics coverage, questions about audience reception can be divided into their readings of positive/negative and simple/complex messages. Assumptions about the audience being duped into believing ‘geneticisation’ because of simplistic coverage have been challenged by reception studies and research into ‘lay understanding’. Condit (1999) has cast into doubt the assumption that audiences read genetic determinism into news reporting, while other research has shown the wealth of lay knowledge on the complexities of inheritance (Kerr, Cunningham-Burley and Amos 1998). As a result of radically different research methods and agendas, however, an impasse has stalled the debate about audience readings of genetic complexity (see Nelkin and Lindee 1998 and Condit 1998). Positive content about hopes and breakthroughs would presumably raise the audience's expectation of the potential of human genetic research. Similarly, reports about dangers or failures could have a negative connotation for the readers. Nevertheless, audience studies that might confirm these assumptions are lacking. In this paper, content will be juxtaposed as simple/complex, or as positive/negative, but without the assumption that these are meanings that can also be attributed to audience readings.

In terms of content, simple/complex and positive/negative portrayals will be assessed separately. Research into complexity has claimed that ‘sober’ evaluations of the true influence of genetics on disease have been absent (Conrad and Weinberg 1996, Peterson 2001). Research has shown that the news media favour mechanistic gene-cause metaphors, glamorize the discoveries of ‘the gene of the week’ and privilege genetic explanations, an enthusiasm that even persists in the less frequent and less prominent ‘disconfirmation’ stories (Conrad 1997, Conrad and Weinberg 1996). Nelkin (2001) claims that the ‘language of biological determinism is pervasive in the press’ (2001: 202). However, these characterisations of oversimplification can be challenged (MacIntyre 1995). Conrad and Weinberg (1996) concede that only when the press is read superficially does the gene for alcoholism appear to have been discovered three times. Miller (1995) has demonstrated the complexities in coverage of genetics and male homosexuality. Meanwhile, there is evidence that the attribution of characteristics to genetic causes by newspapers and magazines in the USA has decreased (Condit, Ofulue and Sheedy 1998). It will be shown that some reports on the ‘first draft’ rejected simplistic ‘gene-cause’ explanations, perhaps reflecting the prominence of the geneticisation debate in the social sciences over the last decade.

The ‘positive’ content of newspaper coverage of human genetic research has been shown in a number of contexts (Cunningham-Burley, Amos and Kerr 1998, Peterson 2001, Conrad 2001). However, discourses of both ‘promise’ and ‘concern’ were revealed in Durant, Hansen and Bauer's (1996) retrospective survey of coverage of the HGP in six British daily and Sunday newspapers between 1989 and 1992. The discourse of promise focused on ‘frontier science’, spectacular breakthroughs and the hope of cures and therapies. The discourse of concern drew together issues of privacy, discrimination, eugenics, employment, reproductive choices and misplaced human intervention (‘playing God’ or tampering with nature). As Conrad and Markens’ (2001) research has demonstrated, even coverage of the same ‘scientific finding’ can translate into news coverage that is optimistic and pessimistic in different national contexts. Although coverage of the ELSIs of human genetics exists, concern has been expressed that it is unchanging, formulaic and routine (Durant, Hansen and Bauer 1996). This uncritical coverage of ELSIs is related to the absence of certain types of evaluation. Previous research has suggested a lack of technical questions about the risks, safety, reliability and accuracy of genetic science (Durant, Hansen and Bauer 1996, Peterson 2001). Further, newspapers have been accused of being uncritical about questions of ‘social value’, i.e. the necessity of the technology, its clinical utility, the promises made about medical progress and the goals, direction and values driving the research (Nelkin and Lindee 1995, Conrad 1997, 1999a, Shakespeare 1999, Peterson 2001). However, a fatality in a clinical trial for a gene therapy product recently provoked critical press coverage about both the commercialisation of genetic research and its medical risks (Nelkin 2001). Using the ‘discourse of concern’ as a point of reference for previous coverage of the HGP, this analysis will focus on the more novel ELSIs reported by the UK press. First, however, it is necessary to analyse briefly the continuation of the ‘discourse of promise’.

The optimistic future of post-genomic medicine

  1. Top of page
  2. Abstract
  3. Introduction
  4. Science, medicine and human genetics in the mass media
  5. The optimistic future of post-genomic medicine
  6. The pessimistic vision of post-genomic society
  7. The incomplete ‘dialogue’ of hope and fear
  8. Discussion and conclusion
  9. Acknowledgements
  10. References

The prominence of the ‘first draft’ in the UK press was demonstrated by its coverage in front page stories, editorial columns and special features. On the day following the announcement (27 June 2000), all 10 national UK newspapers carried reports about the event, including seven front-page stories. During the fortnight, eight newspapers devoted editorials to the HGP (two broadsheets did so twice) and eight newspapers ran special features on the project, the science and its implications (two tabloids being the exceptions). The ‘first draft’ was reported as a seminal event. It was portrayed by the headline writers as a watershed in history, comparable to the greatest moments of social, artistic and scientific ‘progress’. Scientific and political sources had clamoured to underline the project's importance by invoking landmarks in world history such as the invention of the wheel, the moon landing and the ‘discovery’ of the ‘New World’. These historical events contextualised the completion of the HGP as being another seminal moment:

IT's ONE SMALL PIECE OF MAN. ONE GIANT LEAP FOR MANKIND (Jill Palmer and Lucy Rock, The Mirror, 27 June 2000, p. 1)

BIGGER THAN THE WHEEL

Scientists salute the most important advance ever (Jill Palmer and Lucy Rock, The Mirror, 27 June 2000, p. 4)

The press also invoked monumental figures in the history of science such as Copernicus, Newton, Darwin and Einstein. Some newspapers set the ‘first draft’ into a ‘timeline’, locating the project in a linear model of scientific advancement leading from Mendel, through Darwin to Crick and Watson (mimicking a Sanger Centre press release). ‘The Book of Life’ also stood comparison to great artistic achievements, such as Shakespeare's literary creations and Bach's musical scores. Beyond the comparisons with even the greatest human art, US President Clinton was widely quoted: ‘We are learning the language in which God created life’.

The seminal nature of the ‘first draft’ was also communicated in the language used by journalists. Broadsheet headlines included the terms and phrases ‘milestone’ (Roger Highfield, The Daily Telegraph, 27 June 2000, p. 1), ‘fresh start’ (Deborah Orr, The Independent, Review section, 27 June 2000, p. 5) and ‘re-writes existence’ (Clive Cookson, Financial Times, 27 June 2000, p. 15); the term ‘breakthrough’ was commonplace. This language carried with it inferences of progress and advancement that were further evident in the metaphors used throughout the coverage. The human genome was simultaneously a map, a blueprint, software, a key, a recipe, a code and a book, all words that have connotations of learning, knowledge and discovery. Arguably the most apposite descriptive device of all was cartography (as the ‘map’ of the human genome might enable future generations to locate the genes they wish to study). According to President Clinton, this was the most wondrous map ever made. The historical associations, the use of language and the range of metaphors all implied an optimistic view of scientific progress. It was, however, the promises of medical benefits that made explicit the positive potential of the HGP.

Cancer cures and longevity took centre stage as the medical promises of the post-genomic era. The potential of genetic medicine inspired headline writers into some startling statements:

Genes will make us live ‘for 1,200 years’ (Nicholas Rufford, The Sunday Times, 25 June 2000, p. 9)

Gene code could beat all disease (Lisa Reynolds, The Sun, 26 June 2000, p. 12)

Cancer may soon be a thing of the past. Tailor-made drugs to combat disease (Daily Express, 27 June 2000, p. 9)

After years of study researchers learn the ‘recipe’ of life that could wipe out diseases and allow people to live forever.

Hope of a cold cure for cancer (Daily Mail, 26 June 2000, p. 17)

The Genome Project. Treatments.

We now have the key to unlock the causes of cancer. Three other illnesses that could be defeated (Steve Connor, The Independent, 27 June 2000, p. 4)

Some of these headlines may have a basis in fact, but the claims of interested parties (scientists, private companies, research funding organisations and politicians) were largely reported uncritically. In a lone headline there was a warning:

Mapping the human genome

Benefits ‘some distance in future’ (Nigel Hawkes, The Times, 27 June 2000, p. 4)

This cautionary note was not, however, journalistic criticism, but rather a quote from the Director of The Wellcome Trust, a medical charity that helped to fund the research. Such ‘self-criticism’ was a facet of coverage that will be further examined in due course. For now, this stands as a rare example of a more measured form of optimism that ran counter to most headline writers’ exuberant acceptance that genetic knowledge would dramatically and imminently improve medicine.

These findings about ‘positive’ coverage were largely consistent with previous research into science and human genetics in the mass media. Biomedical coverage dominated press reporting (concordant with Krieghbaum 1967, Jones, Connell and Meadows 1978, Hansen and Dickinson 1992, Bauer 1998), despite the implications of genomic knowledge for other fields of practice and study, such as genealogy, criminology, evolutionary biology and psychology. The framing of the ‘first draft’ by other landmarks in social and scientific history was consistent with Kitzinger's (2000) notion of ‘media templates’, that is, journalists’ use of well-known events to set reports in an understandable context. By summoning seminal moments of ‘scientific progess’, journalists placed the HGP firmly within a linear model of scientific advance. Further, the notion of ‘progress’ was clear in the language and metaphors chosen by the project's champions and repeated by the headline writers. Such coverage, it has been argued, serves to underpin the credibility and authority of science (Gardener and Young 1981, La Follette 1982, Nelkin 1985, Collins 1987, Singer 1990). Concordant with Durant, Hansen and Bauer (1996), the positive implications of human genetic science were represented by coverage of the ‘first draft’ as a seminal event that brought medical hope. It was clear that the ‘discourse of promise’ that had surrounded the HGP in its early stages still remained; this was now the ‘optimistic future of post-genomic medicine’ with cancer and longevity dominating the banner headlines. The articles that specifically proclaimed the hopes for genetic medicine rarely challenged assumptions made by the project's proponents about the therapeutic benefits of the genetic science, echoing the findings of Conrad (1997, 1999a) and Peterson (2001). In addition to this ‘positive’ coverage, however, many articles reported the ‘first draft’ from a more pessimistic standpoint.

The pessimistic vision of post-genomic society

  1. Top of page
  2. Abstract
  3. Introduction
  4. Science, medicine and human genetics in the mass media
  5. The optimistic future of post-genomic medicine
  6. The pessimistic vision of post-genomic society
  7. The incomplete ‘dialogue’ of hope and fear
  8. Discussion and conclusion
  9. Acknowledgements
  10. References

Concern about the implications of genetic knowledge was prominent in press coverage of the ‘first draft’. Over half of articles (55%) focused either primarily or partially on the ELSIs of human genetic research. Although 75 per cent of these articles were in the broadsheets, the tabloids also weighed in with their own expert guest writers and critical comment. Almost three-quarters of all articles mentioned at least one or more ELSI, with only 28 per cent of articles making no reference to them at all. There was depth and breadth to reporting on the social concerns for the post-genomic era that, at first glance, would seem to bode well for public awareness and informed policy debate about human genetic research. However, the amount of attention that newspapers gave to different ELSIs showed considerable disparity. This inconsistency will be analysed by evaluating the changes that have occurred in the ‘discourse of concern’, with particular attention given to the vexed question of the social value of genetic technology and the limitations of genetic knowledge.

Four topics dominated the newspaper coverage of ELSIs (Figure 1): the access and control of information, issues surrounding the redesign of human life, commercialisation and concerns about genetic determinism2. Two of these four ELSIs, ‘information: access and control’ and ‘redesigning human life’, addressed the concerns that Durant, Hansen and Bauer (1996) had witnessed in their sample a decade earlier. In coverage of the ‘first draft’, both of these ELSIs were characterised by the popular phrase ‘genetic underclass’. This term reflected the potential for discrimination against people with ‘undesirable’ genetic traits. Journalists reflected on the social and institutional implications of genetic information (‘information: access and control’) in 36 per cent of articles3. Concerns relating to insurance dominated this coverage, while employment issues were less prominent. Comment on both the ethical and practical implications of ‘redesigning human life’ appeared in 35 per cent of articles. Journalists and guest writers frequently raised ethical debates around eugenics, ‘designer babies’, ‘playing God’ and ‘tampering with nature’. This ‘critical’ journalism posed familiar ethical questions about interference with divinity and/or nature, or made critical statements about human hubris. The practical debates focused on social justice, particularly the possibility of ‘eugenicist’ discrimination in medical decisions or inequalities of access to medicine. Although the pessimists’ vision of post-genomic society was now populated by a ‘genetic underclass’, the ‘discourse of concern’ had changed little in 10 years.

image

Figure 1. Major ethical, legal and social implications featured in press coverage.

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The predominance of ‘commercialisation’ and ‘genetic determinism’, in the broadsheet press was a testament to their ‘novelty’. A comparison of the ELSIs covered in the broadsheet and tabloid press clearly shows a disparity between the topics covered (see Table 1).

Table 1.  A comparison of the percentage of articles addressing major ELSIs in tabloid and broadsheet coverage.
ELSI TopicTabloid (%)Broadsheet (%)
Information: access and control3664
Redesigning human life3763
Commercialisation2179
Genetic determinism2179

As established themes of critical media coverage, ‘redesigning human life’ and ‘information: access and control’ continued to feature in all press coverage. Reports in the tabloids, however, showed a greater reliance on these more established themes as a proportion of the total coverage of each ELSI. The broadsheet press clearly dominated ‘commercialisation’ and ‘genetic determinism’, making up almost 80 per cent of coverage on those topics. The novelty of these ELSI debates demanded the greater depth of science coverage that is associated with prestige newspapers (Evans et al. 1990). These two ELSIs were not only novel but also challenged previous research about complexity and social value in media coverage of human genetics (Nelkin and Lindee 1995, Conrad and Weinberg 1996, Conrad 1997, 1999a, Peterson 2001, Nelkin 2001).

The most prominent ELSI in press coverage questioned who would benefit financially from genetic medicine. Concerns about the commercialisation of genetic science appeared in 41 per cent of all articles. As a coding category in this study, commercialism included economic issues surrounding the ownership of therapeutic outcomes, including discussions of the patenting of genes, cell-lines or scientific processes. The prominence of these matters in reporting was not surprising as the HGP was dogged by disputes over information sharing and the monetary value of genetic knowledge4. Mapping the human genome had been a collaborative effort involving a consortium including scientists at 20 institutions in six countries. Set up in 1986, this public sector project was funded by various government agencies and charities. In 1999 a private company, Celera Genomics, Inc. began its own mapping effort. The UK press, however, predominantly discussed the contributions made by the team at The Sanger Centre led by Dr John Sulston (funded by the Wellcome Trust and the UK government) and the privately financed American scientists at Celera Genomics, Inc. headed by Dr Craig Venter. The dispute between Celera's ‘first assembly’ and the public sector's ‘working draft’ had been an on-going and public conflict. Ostensibly the disagreement was about differences in method, competition for plaudits and discrepancies in the sharing of information (public sector scientists freely posted findings on the internet while Celera openly used these data without releasing its own as readily). The underlying issues, however, were the commercialisation of the human genome, the patenting of genes and the public financing of science.

‘War’ and ‘race’ were the metaphors most widely used to describe this dispute between public and private science:

Locked in battle for key to life (Kevin Toolis, The Mirror, 21 June 2000, p. 8)

Egos and genomes: how science got nasty

Scientists at War

Two projects, two views of science (Nigel Hawkes, The Times supplement, 23 June 2000, pp. 1–4)

The miraculous map of mankind

Behind the breakthrough, scientists at war (Daniel Jeffreys and Neil Sears, The Daily Mail, 27 June 2000, p. 17)

Journalists used Venter and Sulston to characterise the conflict inherent in the HGP. Nine articles profiled or interviewed these men; Venter's image appeared 15 times, Sulston's 14. Their beliefs were consistently portrayed as being diametrically opposed:

John Sulston: altruist or moralist?

Craig Venter: maverick or monopolist? (Keith Perry, The Guardian ‘The Story of Life’, 26 June 2000, p. 6)

Human genome: The players

War veteran fights ex-hippie over ‘Book of Life’ (David Derbyshire, Daily Telegraph, 27 June 2000, p. 7)

Some newspapers even reported on and reinforced notions of Sulston and Venter as (respectively) ‘good’ and ‘evil’, ‘hero’ and ‘villain’. This reduction of the issues to personal antagonism was influenced by the operation of news values that rate conflict and ‘real’ people as more interesting than consensus and ‘impersonal’ organisations. It did, however, open up the discussion to questions of funding, ownership and commercialisation that placed the science into its economic and political context.

The conflict inspired debate about the social value of new technology, as the press questioned who should pay for human genetic research, and asked who would benefit from it. Guest comments and feature articles about the implications of commercialised genetic science appeared in both broadsheets and tabloids (a greater proportion in the former).

Fears amid science's euphoria

You can’t put a price on a human goldmine (John Burn, Daily Mail, 27 June 2000, p. 18)

Who owns the genome? Patenting our genes (James Meek, The Guardian ‘The Story of Life’ supplement, 26 June 2000, pp. 8–9)

Patenting was the novel and contentious issue. The politically partisan broadsheet editorials had predictably polarised opinions, either for or against private sector involvement in science and medicine:

The Gene Frontier. Science will not be advanced by outlawing profits (The Times, 27 June 2000, p. n/k)

We can’t rely on private firms to exploit the full potential of the genome (The Independent, 27 June 2000, p. 3)

The influence of patenting gene sequences on future research was the primary topic of debate, particularly the extent to which private sector medical science served the interests of the general public. Some journalists and newspapers took up the opportunity to question assumptions about the public benefit that would stem from the HGP. In this case, ironically, simplification and sensationalism provided a vehicle for the press to locate science within its political and economic context. The conflict between the public and private research teams enabled journalists to create coverage that questioned the social value of genetic science, albeit sometimes in a superficial manner.

The appearance of ‘genetic determinism’ in 25 per cent of all articles was evidence that newspaper coverage attended to the complexity of genetic science, posing further questions about its social value. As a coding category in this study ‘genetic determinism’ encompassed both ethical debate (e.g. free choice and responsibility) and research/policy implications (e.g. the over-privileging of genetic science in medical research and public health funding), although journalists gave little attention to these latter concerns. A number of reports and comments drew attention to the limitations of genetic knowledge:

We are bigger than our genes – thank God (John Humphrys, The Sunday Times, 2 July 2001, p. 17)

The genome project. An alternative view

More to the human condition than genes alone (Pat Bateson, The Independent, 27 June 2000, p. 4)

This is the key to life but not the secret of a perfect one (Dr Anthony Daniels, The Sunday Telegraph, 25 June 2000, p. 35)

The focus of such reporting was the ‘negative’ connotation for genetic reductionism on free will, self-responsibility and the human spirit, reflecting the social scientific debate about ‘geneticisation’. Other aspects of coverage of this ELSI theme underlined the complexity of genetic influences on aetiology, noteworthy because they are counterfactual to claims of over-simplistic media coverage of human genetics. Interestingly, it was often the scientists themselves who were reported as qualifying the influence of genetics and guarding against simplistic genetic determinism.

Despite the moderation of some scientists’ portrayals of genetic causality, examples of the press's wildly inflated claims for post-genomic medicine have already been shown. Some journalists, however, were critical of the hyperbole that had surrounded the ‘first draft’ announcement. Such articles contributed to ‘genetic determinism’ being a prominent theme in this sample of news coverage. Before and after the announcement guest writers, critics and commentators denounced the ‘hype’ and scorned the over-inflation of public expectation:

Genomania: a fire that needs dousing (Maggie Gee, The Daily Telegraph, 1 July 2000, p. n/k)

I hate to be a spoilsport, but don’t get so excited over the genome project (Hamish McRae, The Independent ‘The Thursday Review’, 29 June 2000, p. 4)

Man created hysteria – and it was not good (Simon Jenkins, The Times, 28 June 2000, p. 20)

The genome project is little more than reams of meaningless data (Andrew Brown, The Independent ‘The Friday Review’, 23 June 2000, p. 4)

These opinions, however, were limited to the contrary broadsheet commentators whose scorn was largely directed at the words of scientists and politicians rather than their own colleagues for uncritically repeating them. Nevertheless, as such coverage called into question the utility of the output of the HGP, this was further evidence that newspapers questioned the social value of genetic research. Articles that guarded against the excesses of genetic reductionism, criticised the hype surrounding the announcement and highlighted the limitations of genetic knowledge, were evidence of nuance and complexity within coverage of the ‘first draft’.

A number of less prominent debates gained coverage, as illustrated in Figure 2: Minor ELSIs. Some of these have the potential to become more conspicuous in future coverage. ‘Dilemmas for individuals’ were evident as the choices and dilemmas around screening/testing and therapies that were mentioned in 13 per cent of all articles. This minimal coverage supports Kitzinger and Reilly's (1997) suggestion that, while research remains at the discovery stage, insight into the personal implications of medical genetics remain a marginal concern for the mass media. As issues of scientific governance, ‘democracy and accountability’ and ‘national economic implications’ have a similar potential to become more prominent if genetic science moves from the ‘bench’ to the clinic. The former included articles that made any reference to the need for advisory, regulatory and legislative frameworks (14%); the latter numbered the pieces that discussed arguments about the benefits or drawbacks of the HGP for the national economy (4%).

image

Figure 2. Minor ethical, legal and social implications featured in press coverage.

Download figure to PowerPoint

While most of these ‘Minor ELSIs’ failed to command the entire focus of a report, ‘ageing’ was a self-contained, novel theme that captured the imagination of columnists and commentators. This was a topic that encapsulated coverage of the ‘first draft’ as it illustrated the overlap of the ambitions and anxieties associated with human genetics. Although some headlines triumphantly claimed ‘living forever’ as a panacea, the social and personal realities of longevity stimulated critical questioning:

Who wants to live forever (David Mellor, Sunday People, 02 July 2000, p. 25)

Would you want to live to be 250? (Paul David, Daily Star, 27 June 2000, p. 6)

A century not out (Jenni Murray, Daily Express, 27 June 2000, p. 13)

(F: The story of life)

New frontiers. Mortality and morality. (James Meek, The Guardian, 26 June 2000, pp. 12–13)

The social dilemmas associated with longevity, such as employment, housing, public health and the economy were raised in eight per cent of articles. As a personal issue, ‘growing old’ was jovially commented upon but with the insinuation that an increased life span had associated problems. Articles on ageing openly questioned the social value of science by rhetorically asking if quantity of life was more valuable than quality of life. While the simple ‘quality/quantity’ polarisation of some reports obviously lacked nuance, increased life expectancy was greeted in the newspapers with an ambivalence that, as will be show, characterised the entire ‘first draft’ coverage.

The pessimistic vision of post-genomic society in the UK press combined the issues of ethics and discrimination prominent in Durant, Hansen and Bauer's (1996)‘discourse of concern’ with disquiet about the commercial exploitation of genetic science and genetic determinism. Media anxieties about the commercialisation of genetic science (Nelkin 2001) were, in this coverage, often sensationalised into a conflict between private and public research teams. Nevertheless, such reporting stimulated concerns about patenting the human body, profiteering from ‘common’ genetic heritage and the implications for public health care. Press coverage of the ‘negative’ impact of genetic determinism was novel and mirrored the social science critique of the 1990s. Scientists were reported as qualifying simplistic ‘gene-cause’ explanations, although arguably in an attempt to pre-empt accusations of over-inflating public expectations and avoid future criticisms of under-achievement. Contrary to previous research (Conrad and Weinberg 1996, Conrad 1997, Peterson 2001, Nelkin 2001) some reporting of the ‘first draft’ amouncement in the UK press acknowledged the limitations and complexity of genetic knowledge (in concordance with Miller 1995). Also, in contrast to previous findings (Nelkin and Lindee 1995, Conrad 1997, 1999a, Peterson 2001), aspects of the press's pessimistic vision of post-genomic society questioned the social value of genetic science. In some aspects of the ‘first draft’ coverage journalists queried the public benefit from commercial science, the utility of genetic information and the goal of extending human life. Beneath the headlines of an optimistic future for post-genomic medicine and the more hackneyed anxieties about post-genomic society, there was evidence that the UK press were not entirely convinced about the promises, benefits and aims of the HGP.

The incomplete ‘dialogue’ of hope and fear

  1. Top of page
  2. Abstract
  3. Introduction
  4. Science, medicine and human genetics in the mass media
  5. The optimistic future of post-genomic medicine
  6. The pessimistic vision of post-genomic society
  7. The incomplete ‘dialogue’ of hope and fear
  8. Discussion and conclusion
  9. Acknowledgements
  10. References

The existence of articles about both medical promise and social concern could be used to suggest ‘balanced’ coverage or even critical engagement on the part of the press. Coverage appears in a less favourable light, however, after a consideration of both the ‘voices’ that journalists used to illustrate social concerns and the ‘topics’ that were absent. The political and scientific communities that funded or carried out the HGP, and triumphantly announced its completion, were also influential in shaping coverage of its ELSIs. This had the effect of linking social concern and medical promise into a single discourse, or at least a dialogue between ostensibly opposing voices. The defining characteristic of press coverage of the ‘first draft’ was ambivalence between hope and fear. The UK press presented the near completion of the map of the human genome as a double-edged sword:

The Human Genome: Genetic testing

Advance is a mixed blessing (Victoria Griffith, Financial Times, 27 June 2000, p. 15)

All human life is here

This picture marks a milestone in man's knowledge of himself … for good or evil (Roger Highfield, The Daily Telegraph, 27 June 2000, p. 1)

Human Genome: the future

Could this be the answer to all our ills … Or a sinister Pandora's box? (David Derbyshire, The Daily Telegraph, 27 June 2000, p. 5)

The secret of life. The genome brings hope – and fear (The Guardian, 26 June 2000, p. 19)

In its ambivalence the press lauded a great scientific achievement while reporting the public and social institutional disquiet about its implications. Journalists addressed the medical aspirations and social anxieties of the post-genomic era within single articles, while editors positioned positive and negative articles in tandem within special features. This dialogue was, however, incomplete.

A disparity between the UK press's selection of sources demonstrated that certain ‘voices’ dominated comment on the ELSIs of the ‘first draft’. In many examples, the scientific and political sources reported as proclaiming the benefits of the HGP were also used to explain the potential ELSIs. Prime Minister Blair's widely quoted warning about the potential social or political abuses of genetic knowledge led to ELSIs featuring in most lead news stories on the day of the announcement. The scientists at the centre of the coverage, Sulston and Venter, were both reported as having social concerns:

Putting the monsters to the back of his mind (Jasper Gerrard, The Sunday Times, 2 July 2000, p. 5)

The genome general. War pushed Craig Venter into the study of life (Ben MacIntyre, The Times supplement, 23 June 2000 p. 5)

An analysis of the sources quoted by journalists in their coverage of ELSIs confirms this reliance on scientists and politicians. Articles that led on ELSIs contained 69 direct quotes and the three largest sources of these were research scientists and funding bodies (33%), policy makers (23%) and financial organisations (10%). The combined input of affected people, disability activists, physicians and religious representatives totalled 13 per cent5. This suggests that ELSIs were a highly visible aspect of coverage because of their inclusion on the agenda of prominent sources, rather than because of critical or engaged journalism.

Reports of resolved rivalry between the public sector scientists and Celera Genomics was further evidence of the influence of the sources that managed the ‘first draft’ as a news event. The HGP was still an unfinished project, raising the question: why June 26? Admittedly, the project was close to completion (both public and private teams eventually published their data early in 2001), and arranging public support from political leaders involves planning. More importantly, however, mutual animosity was simmering between the public and private research groups and threatened to turn a momentous scientific event into an unseemly argument. Given the cost of public funding, this was a disagreement that had political and economic repercussions. It was widely reported that political pressure was exerted to make the ‘rival’ mapping efforts ‘work together’, at least in public for the duration of the announcement. While it is not possible to determine categorically if public displays of harmony were simply political manoeuvring, some headline-writers accepted the portrayal of a united ‘scientific front’:

Biotech rivals to share credit for DNA success (Ben Macintyre, The Times, 23 June 2000, p. 23)

The End of Cancer

Rivals who were brought together for breakthrough (Jill Palmer, The Mirror, 27 June 2000, p. 6)

Genome rivals will complete project together (John von Radowitz, The Independent, 26 June 2000, p. 4)

Clearly, the commencement date of the post-genomic era was influenced by the politics of science. Further, the following analysis demonstrates that the press's dialogue of hope and fear was partial, raising a question about the representativeness of press coverage.

An analysis of references made to medical benefits and risks showed the rarity of articles that questioned the safety and reliability of genetic interventions in medicine, while those that uncritically accepted the therapeutic benefits of genetic science were common. In the ‘first draft’ coverage, 72 per cent of articles reported only the medical benefits. Not a single article reported on the risks of genetic medicine without mentioning the benefits (a mere six per cent mentioned both the risks and benefits, while 22 per cent referred to neither). The lack of critical questioning about medical risks could be explained by the HGP's context as ‘breakthrough’ science. It is plausible that the ‘deficient’ coverage of risks and reliability may only be rectified if genetic science has unforeseen or negative outcomes in clinical settings. Certainly, widespread press attention was given to the death of a volunteer in a gene therapy trial in September 1999. Despite this, however, newspaper coverage of the ‘first draft’ largely failed to re-examine that tragic event, or discuss the real and potential risks associated with medical genetics.

The partial nature of the press coverage is also apparent from an analysis of other ELSIs that were marginal or absent. Alternative ‘information’ issues such as civil liberties, surveillance and the complications that human genetics poses to the legal and medical professions were largely absent. Coverage of the ‘genetic underclass’ sparsely addressed the potential for individual decisions to undertake pre-implantation genetic diagnosis (PGD) to result in social eugenics. Religious and animal advocacy worldviews were marginal and only fleeting attention was given to the implications of behavioural genetics for understanding criminality or sexuality. ‘Global’ concerns about ‘bio-piracy’ and health inequalities were virtually untouched, while the potential for genetic science to become the basis for weapons technology was completely absent. Even those articles that addressed the social value and utility of genetic knowledge rarely confronted the current ‘therapeutic gap’ between genetic diagnosis and medical interventions (Shakespeare 1999) or the opportunity costs of genetic research in the funding of public science and healthcare (Lippman 1994). Despite the presence of all of these issues in academic debate and other contemporary media discussions, they were virtually untouched in the reporting of the ‘first draft’. Clearly, the concerns that journalists reported after the announcement of the ‘first draft’ were not fully representative of the ELSIs surrounding human genetic science.

This analysis of the ‘dialogue of hope and fear’ has shown that it was incomplete because coverage was ‘source dependent’ and only addressed particular ELSIs. Previous research has shown that news lacks technical questioning about the risk, reliability and safety of genetic interventions in medicine (Durant, Hansen and Bauer 1996, Peterson 2001), a finding confirmed by this analysis. The press’ reliance on scientific and political sources was also concordant with studies (Cunningham-Burley, Amos and Kerr 1998, Conrad 1999b, Nelkin 2001, Nerlich, Dingwall and Clarke 2002). The novelty of this case study was that these sources were shown to be dominant in coverage of the ELSIs of human genetic research. Journalists reporting on the ‘first draft’ used the project's proponents to explain and illustrate its potential for having harmful affects. The notable deficiencies in both the ELSIs and the ‘sources’ that were represented means that press ambivalence toward the ‘first draft’ should not be mistaken as ‘balanced’ or ‘critical’ coverage. In light of this evidence, this paper will now discuss how this incomplete dialogue of hope and fear might contribute to public awareness and policy frameworks surrounding the ELSIs of human genetic research.

Discussion and conclusion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Science, medicine and human genetics in the mass media
  5. The optimistic future of post-genomic medicine
  6. The pessimistic vision of post-genomic society
  7. The incomplete ‘dialogue’ of hope and fear
  8. Discussion and conclusion
  9. Acknowledgements
  10. References

In its reporting of the ‘first draft’ an ambivalent UK press veered between the poles of ‘medical promise’ and ‘social concern’. The ‘positive’ framing of the HGP centred on the hopes for medical benefits following the scientific ‘breakthrough’. These ambitions were particularly focused on longevity and a cure for cancer and echoed the exuberance of the project's proponents. The pessimistic vision of post-genomic society was the press contribution to public awareness and policy frameworks surrounding the ELSIs of the HGP. Journalists prominently reported the long-standing ethical and practical concerns that surround the redesign of human life and the misuse of genetic information, often characterised by anxieties about the disenfranchisement of a ‘genetic underclass’. The reporting of two more novel ELSIs, ‘commercialisation’ and ‘genetic determinism’, showed that media framing of the ‘discourse of concern’ had changed since the 1990s. These aspects of coverage were also interesting because, contrary to previous studies, they recognised the complexity of genetic science, located it in a political and economic context and queried its social value.

The limitations and complexity of genetic science were not only apparent in reports where scientists actively qualified the influence of genes on health, but also in press criticism of genetic determinism and ‘hype’. These latter acknowledgements of complexity were framed by a concern about the ‘negative’ social implications of genetic determinism that reflected the ‘geneticisation’ critique of some social scientists. Discussion about the social value of human genetic science arose in articles on ‘hype’, particularly those that questioned the promises being made about the medical utility of the HGP. Social value was also addressed in the coverage of ‘ageing’ that questioned the aim of using genetic knowledge to achieve longevity. Furthermore, articles that addressed the implications of commercialised genetic science sometimes posed questions about who would benefit financially from the project and what outcomes this might have for public health. This theme of ELSIs coverage also exposed the political and economic context of genetic science, despite attempts by the project's proponents to gloss over the conflict between the publicly and privately funded research teams. Broadsheets and tabloids alike were enthralled by the patenting of DNA, particularly the potential for this to help or hinder future medical research or public health care. As a potential resource for informing public awareness and policy debate over the ELSIs of the HGP, UK newspaper coverage of the ‘first draft’ included content that addressed the complexity, social value and political and economic contexts of human genetic science.

Despite this widespread and prominent consideration of ELSIs, there were distinct limitations to press coverage that might also influence public awareness and policy agendas. First, it was clear that the project's proponents were journalists’ key source of information about its ELSIs. The scientific and political sources involved in the HGP expressed only the aspects of social concern that suited their needs, or were ‘manageable’. For example, coverage of ‘genetic determinism’ reported on the scientists who were stating that genes are rarely the only factor in aetiology and that mapping the genome was but the first step for potentially deriving useful medical information. As noted earlier, such ‘qualifications’ act in the interests of scientists by pre-empting future charges of underachievement or rebutting criticisms of geneticisation. The overt influence of political news management was clear throughout initial coverage, particularly in articles that presented the HGP as a joint achievement for science in both the public and private sectors. This ‘positive’ spin acts in the interests of the politicians, both justifying the decision publicly to fund an expensive ‘blue sky’ science project, and bolstering an important sector of the growing ‘knowledge economy’. Furthermore, these same political sources also voiced concerns about discrimination and privacy. Notably, these are issues on the existing policy agenda that may require resolution if national economies are to reap the potential financial rewards of genetic knowledge. These are ‘manageable’ ELSIs that, arguably, can be addressed by legal and regulatory frameworks that control, for example, genetic discrimination or ‘unethical’ research. In many instances UK press coverage echoed this perspective, by acknowledging discrimination and privacy as social concerns but within a framework that would allow for their future resolution.

A second deficiency in the ELSIs coverage was that reporting was limited in its selection of issues, or in its extent of ‘critical’ insight. Long-standing concerns over ethics and discrimination were again prominent, although these issues are now on the agenda of the HGP's proponents. Coverage of the more novel concerns was often limited in either the depth or the scope of their presentation. Articles on the limitations of genetic science were visible in this analysis, but had a limited scope as they mainly appeared as reactions to the ‘hype’ surrounding the ‘first draft’ announcement and were largely limited to commentators in the broadsheets. Coverage of the commercialisation of genetics often lacked depth as it was refracted through a lens of ‘news values’ that framed the issue as a personal conflict between the prominent public and private sector scientists. Reporting of ‘personal dilemmas’ and issues of political and economic ‘governance’ was limited, although this has a potential to become more prominent if this ‘breakthrough’ is translated into clinically useful applications. However, coverage rarely noted that the social benefits of the HGP rest on genetic knowledge having clinical utility for curing (not just redefining) disease or that the opportunity costs of the project have been massive. Crucially, the press scarcely reported the concerns of those antagonistic toward genetic science, such as the risks and reliability of experimental techniques such as gene therapy. In respect of both the sources cited in articles and the extent and range of critical reporting, UK press coverage of the ‘first draft’ announcement had distinct shortfalls in its framing of the ELSIs for public and policy debate.

Returning to the broader context of media representations of science, this analysis of the coverage of the ‘first draft’ produced fresh evidence for debates on ‘critical’ engagement and ‘ideological bias’. It has been argued that it would be wrong to conclude that coverage of the project's ELSIs was the product of a ‘critical’ media. Coverage of long-standing ELSIs was often formulaic, while the more novel concerns were usually framed by sensationalist news values or inspired by the hype surrounding the announcement. Coverage of ELSIs addressed only a limited number of issues and, in their reporting of them, journalists were largely dependent on the sources that were championing the HGP. This ‘source dependence’ meant coverage mainly focused on those ELSIs that were ‘manageable’ by regulation or legislation, at the expense of issues such as risk, clinical utility or opportunity costs. As a consequence of these limitations, it is reasonable to conclude that UK newspapers failed to be ‘critical’ in their reporting of the ‘first draft’. At its most naïve, press coverage presented the HGP as the harmonious advancement of science, with a dialogue existing between politicians and scientists to manage any social concerns that might obstruct the promised medical benefits. This paper has demonstrated, however, that this dialogue of hope and fear was biased and incomplete.

The media acceptance of both the ‘first draft’ as a seminal event and the accompanying promises for an improved future were evidence of an ‘ideological bias’ toward the notion of scientific progress. This support for the legitimacy of science was, at first glance, offset by the prominence of ELSIs in news coverage. On closer analysis, the ELSIs were merely issues that challenged the credibility of governance rather than the legitimacy of biomedical science. The scientific and political communities who funded and carried out the research were reported as proclaiming their awareness of the limitations of their science, the social concerns that accompany it and the need for appropriate regulatory and legislative frameworks. Arguably, this was an attempt to pre-empt social disquiet and set an ‘appropriate’ ELSI agenda. Certainly, news coverage repeated the concerns of the HGP's proponents and presented human genetic science as a double-edged sword. At its most critical, the press coverage of novel concerns questioned the social value of genetic science. Such coverage challenged the ability of both policy makers and scientists to pro-actively ‘direct’ science in a way that was socially beneficial, as opposed to reactively dealing with the social outcomes of scientific change. Press ambivalence toward ‘living forever’ encapsulated this climate of mistrust around scientific governance. The mismatch between the values and aims of genetic science, the ability of society to manage its outcomes and the desires of the public were never clearer than in the press attitude to longevity. As a columnist in a popular Sunday tabloid rhetorically asked: who wants to live forever.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Introduction
  4. Science, medicine and human genetics in the mass media
  5. The optimistic future of post-genomic medicine
  6. The pessimistic vision of post-genomic society
  7. The incomplete ‘dialogue’ of hope and fear
  8. Discussion and conclusion
  9. Acknowledgements
  10. References

Thanks are due to The Wellcome Trust for funding this research (Project Number: 058105) and colleagues Jenny Kitzinger, Lesley Henderson, Julie Warren, Dimple Patel and John Eldridge. I am also grateful to Patrick Wallis, Jenny Kitzinger and two anonymous referees for their helpful comments on an earlier draft of this paper.

Notes
  • 1

    ‘Free-standing’ cartoons and readers letters were not included in this analysis.

  • 2

    As articles addressed one or more ELSI, n= 221 in the Figures 1 and 2.

  • 3

    These include insurance, employment, criminal or medical databases, civil liberties, paternity, Doctors’ duties to inform relatives of test results, criminals’ rights to be tested and allusions to state surveillance and control.

  • 4

    Articles were only coded if they included direct references to commercialism (i.e. reports of the ‘race’ or ‘competition’ were not included if explicit discussion of financial motivations were not invoked).

  • 5

    Quotes from each one of these groups numbered 3 or less. The remaining 20% of the sample (n= 69) were ‘other’ sources not covered by the specified categories.

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  2. Abstract
  3. Introduction
  4. Science, medicine and human genetics in the mass media
  5. The optimistic future of post-genomic medicine
  6. The pessimistic vision of post-genomic society
  7. The incomplete ‘dialogue’ of hope and fear
  8. Discussion and conclusion
  9. Acknowledgements
  10. References
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