Sleepwalking 1: The role of the UK media in genetics issues

by Steven Emery

Saturday 10 November 2012

M-Shed, Bristol

With thanks to The Leverhulme Trust, the project funders

Outline

• 1. Introduction – Genetics and Deafness in the news

• 2. The current science and the media reporting: fact and fiction

• 3. Questions on the role of the media: politics and the media

• 4. An analysis of reporting on genetics and deafness

• 5. Power and resistance

1. Introduction

Some news stories on genetic developments and ‘miracle cures’

over the years

http://news.bbc.co.uk/1/hi/health/102450.stm

Credit: Alison Bryan, posted in Deaf-Yahoo Groups 31/10/2004; The Sunday Times

http://www.brisbanetimes.com.au/business/we-can-consign-deafness-to-history-businesswoman-of-the-year-20111011-1liw4.html

From: The Brisbane Times, Australia

2. The current science and the media reporting: fact and fiction

• Gregor’s paper, he gave an overview of where the science is going:– Negative Eugenics, the intention to eliminate and screen out

disabilities/conditions;

– Positive Eugenics, the use of genetic science to enhance human abilities

• Our focus is largely on the ‘negative eugenics’

• Science claims: what is a fact, what is a fiction or future possibility?

• Fact: stem cell research is and has been made to restore hearing to mice– For example, stem cell research on gerbils...

Researchers hope they will be able to one day treat deafness with stem cells

Deaf gerbils 'hear again' after stem cell cureBy James Gallagher Health and science reporter, BBC News

UK researchers say they have taken a huge step forward in treating deafness after stem cells were used to restore hearing in animals for the first time.

Hearing partially improved when nerves in the ear, which pass sounds into the brain, were rebuilt in gerbils - a UK study in the journal Nature reports.

Getting the same improvement in people would be a shift from being unable to hear traffic to hearing a conversation.

However, treating humans is still a distant prospect.

Source: BBC News, 12 September 2012http://www.bbc.co.uk/news/health-19570024

Gene therapy: Glybera approved by European CommissionBy James GallagherHealth and science reporter, BBC News

A treatment which corrects errors in a person's genetic code has been approved for commercial use in Europe for the first time.

The European Commission has given Glybera marketing authorisation, meaning it can be sold throughout the EU.

It is a gene therapy for a rare disease which leaves people unable to properly digest fats.

The manufacturers say it will be available next year.

Gene therapies alter a patient's DNA

Source: BBC News, 2 November 2012http://www.bbc.co.uk/news/health-20179561

Fiction: gene therapy or stem cell research is being done to restore hearing to humans: It’s simply still too risky: one experiment that was done resulted in the death of the person, while two young people contacted leukaemia.

-However, Gene Therapy looks like it will happen next year...as announced only last week!-It will cost $1.6millon per patient!

• Fact: screening for a number of health conditions has multiplied rapidly– For example, a single test for 100 conditions is available for $350 over the internet, from Counsyl

(based in the USA) – see also below, a test for 160 conditions

– A test is being made to screen 595 conditions; scientists predict a single test for 3,500 conditions will become available in the near future.

GenPath – Women’s Health

http://www.genpathdiagnostics.com/womens-health/for-patients/inherigen/

• Fiction: screening means it is easier to eliminate a health condition via genetic science

– For example, in order to screen out, either:

• A test can be done on a foetus but if it’s found to have the condition it would need to be aborted – in other words that screening out cannot be done before the embryo becomes a foetus;

• The mother undergoes IVF and has tests on the embryo’s, with the healthy ones being chosen for implantation (this is a highly technical and emotional process that has a very small chance of success). Currently in the UK 200 conditions can be tested for.

• Will pressure be put on women to take genetic screening in future?

http://healthland.time.com/2011/10/27/before-egg-meets-sperm-a-new-consideration-do-all-women-who-want-to-get-pregnant-need-genetic-testing/

3. Politics and the media

• In light of the fact that scientific developments are moving slower than scientists would like, why does the media continue to give the impression cures for deafness and other health conditions are getting closer?

• Our argument: genetic organisations have their own political agenda

• Individual genetic scientists may be undertaking research with ‘good intentions’– For example, to seek out ways to restore hearing to people who lose it in

later life and want science to find solutions (‘Deafeating Deafness’)

– But, the corporations scientists work for are not ‘neutral’, ‘non-political’ bodies, simply striving to ‘identify genes’ and promote ‘public understanding’

• But, they need ongoing research funding to pursue their scientific aims: it makes sense for the industry to promote their findings: example, The Jackson Laboratory

Role of the media: a major player

• The media, in search of a good story, is an ideal collaborator, but it is much more than that…

• The media becomes a tool for a powerful (medical) institution to gain ‘consent’ for its research goals (we will explain what we mean)

• We call this a process of ‘manufacturing consent’ after Herman and Chomsky (1988)

Ways in which consent is gained from the public

• In media studies, we identify micro parts of the reporting and link up their relationship to macro parts…

• The micro parts refers to the language of the discourse used– For example, we will look at the headline: ‘Deaf demand right to

designer deaf children’: that is an example of a micro analysis

• The macro refers to how this use of language is designed to legitimise power through acts of social control– For example, the language being used (micro) refers to a Bill passing

through parliament that intends to become an Act of Parliament

4. The Media, what stories we chose to investigate and why

• We focused on 5 pieces of press reporting on the objection to clause 14.4.9 of the Human Fertilisation and Embryology Act 2008

• A brief recap of the HFEA, clause 14.4.9

• But please do not worry too much about the technical details of the HFEA – our focus is the media reporting.

• At the time of the clause, CDS collected a large amount of material relating to the clause.

• The five pieces we have chosen enable us to demonstrate the media’s part in seeking to legitimatise the clause

How did the media ‘manufacture consent’ for the clause?

• We will look at four particular ways, examples will follow in slides following the news items.

• 1. Promoting those with authority. Presents an aura of trust for the article content. Scientist and Professors, for e.g., are considered ‘knowledgeable’ and ‘experts’

• 2. Readers or participants are obliged to work with how the media has framed the debate (e.g. Are Deaf people disabled?).

• 3. There may be no alternative media or discourse available.

• 4. Readers may not have the knowledge, self-belief or resources to challenge the dominant discourse, especially when complex medical or scientific terms are used.

A summary: look out for the following themes in the following news items ?

Those who have authority

How the debate is ‘framed’

Alternative media

availability

Knowledge of the discourses

Credit: TimesOnline

Credits: TeamHaddo,BBC Radio 4; Stop Eugenics (uk2008)

Credit: The Sun

http://englishplace.wetpaint.com/page/Choosing+a+Deaf+Child+is+Criminal

Credits: The Times; English Place

http://www.dailymail.co.uk/news/article-531170/Creating-deaf-child-IS-immoral-parent-allowed-choose-child.html

Credit: The Daily Mail

The Clash of Discourses

• All articles called on or were related to people who had some form of authority:– Times Online: Heads of RNID and BDA; a former Liberal Democrat MP, a Professor.

– BBC Radio 4: John Humphries, a well-known news reporter; the BBC

– The Sun: David Blunkett, a former government minister

– The Independent: a well-known journalist, for that newspaper, Daniel Finklestein

– The Mail Online: Hilary Freedman: a journalist who has a deaf brother

• Framing of the debate by the media:– ‘Deaf people want to design deaf babies’

– ‘Deaf people are disabled because they can’t hear Beethoven’ or ‘lack one of the five senses’

– The Stop Eugenics argument that the clause was a step towards eugenics, or enabled the selection of an embryo which was more likely to be born hearing, were not given an airing;

• Alternative Media may not be available or accessible:– Alternative media had to compete with more a more dominant press : e.g. the MailOnline is the most

accessed source of news; Deaf people can’t put across their views on Radio!

– The alternative media that was available largely ‘reacted’ to events.

• Knowing the subject to challenge the dominant discourses:– The clause and the issues it involved was a specialist subject using scientific and medical terms

– The language was unfamiliar to a Deaf audience

– Those with knowledge and scientific authority were therefore at an advantage

• The media ‘timed’ the news story: A ‘Stop Eugenics’ press release opposing the clause was released at the beginning of January 2008; the media only reported extensively on the issue once they had found a ‘human interest’ angle involving a deaf couple, in March 2008.

– Four of the five media pieces refer to Tomato and Paula, a Deaf couple opposing the clause....their story was first reported in The Observer...

5. Power and Resistance

Source: The Observer, 9 March 2008

• Throughout the news reports there is little space given for Deaf people to write about the notion of the Deaf community as a linguistic minority group, as opposed to a people who were seeking a cure:– Deaf people had to ‘react’ to the news media, they did not lead on it

– No reports about why Deaf people believe it is OK and acceptable to be Deaf

– What it means, in practice, to be a language minority community and part of Deaf culture: e.g. Deaf people’s offer to Baroness Deech to spend some time with a Deaf family.

• Some of the reporting does not make some issues explicit, for example:– Those who hold the power, e.g. genetic scientists, the medical profession, are

presented as apolitical

– The potential impacts of the legislation on hearing people (as seen in Gregor’s talk on ‘positive’ eugenics and from a real life attempt to select a hearing baby

http://www.smh.com.au/articles/2003/07/10/1057783286800.html

Some questions• Are the media really trying to gain consent of the majority of people?

• What do the media/powerful fear?

• Are they worried that if disabled people obtain the right to create disabled babies, hearing people will demand the right to create and design the type of child they want (free from disability; better IQ than normal; blue eyes, etc)?

• And if that happens, does that then indicate that those with power could lose control over the population, and thus need to work hard at attempting to control and shape those demands

• Could we see a future as depicted in the film Gattaca - i.e.

where designing and creating babies is the norm and society is

divided into the ‘valids’, the genetically superior who get all the

top jobs, while those created naturally are classified as

‘in-valids’ and constitute an underclass who do menial tasks.

• Or will we see developments highlighted in the short film

The End, where Deaf people are genetically eliminated and

the last Deaf person alive is in 2046….

http://www.bslzone.co.uk/bsl-zone/zoom-focus-the-end/

Credit: BSL Zone

• We cannot predict the future: but given the advance of the eugenic movement, it is vitally important to keep track of developments due to the potential they have to go quickly from science fiction/media hype to reality…see next slide…

Liberal Eugenics

• We know enough about overt eugenic policies that have happened in the past: as Gregor has pointed out, it can happen again the future

• And it appears to be in the guise of liberal eugenics.

• Liberal eugenics advocates enabling parents the free choice to use technologies to ensure their children are born free of ‘disability’. One advocate is Johann Hari (a writer for The Independent) who writes (06/07/2006):

– By ensuring the number of able-bodied babies are maximised, we are simply acknowledging that...lacking an ability to hear or see or walk ... is a disability nobody would voluntary choose, and that you are better off without.

– We should be honest ...to call this attempt to improve the genetic lot of humanity by its name – liberal eugenics. It has nothing to do with the evil of Nazi eugenics...no, this brand is voluntary entered into by parents.

• Therefore it is not only conservative or far right governments which seek to put eugenics policies into practice; those who have a liberal attitude in society are arguing for the moral obligation on parents not to allow disabled babies to be born.

The nature/importance of resistance

• The power of the media is not absolute : i.e. not everyone agrees with what is reported; diversity is valued; being deaf or disabled is OK.

• Discourse is always mediated. The media and the powerful can only remain legitimate for as long as people allow them to be so. Therefore, the powerful rule by acquiescence, not by force.

– For example, the Hillsborough disaster when 96 people were crushed to death during a football match: the families campaigned vigorously against the media depiction that the Liverpool supporters were to blame for the tragedy;

– People are therefore agents in the process of that mediation: they can accept by consenting (which is what the powerful work hard to achieve), or they can resist.

• Deaf communities, along with hearing allies, resisted the clause and put forward their own discourses.

• In spite of the media discourses, the resistance created/opened up the space for a debate.

The impact of Deaf resistance

• That resistance has already had an impact:– Human Fertilisation and Embryology Authority have not yet agreed that deafness genes

can be screened for under Pre-implantation Genetic Diagnosis; that is in spite of a deafness related gene (Pendred Syndrome) being available as part of a test for 100 conditions by ‘Counsyl’ and 160 conditions by ‘GenPath’;

– The Human Genetic Commission did not include deafness as an example of a condition in a recent updated report; they had done so in a previous document.

• Because the science is still undeveloped, there is still time for positive representations of Deaf and disabled people to affect public consciousness:

• i.e. DEAF AND DISABLED PEOPLE ARE OK!

Resisting the manufacturing of consent

Deaf communities are very small – an easier target

So manufacturing consent (and maintaining hegemony) therefore depends on acquiescence through support from hearing people, including disabled people. The task of resistance involves:

• Regularly exposing the ways the dominant discourses operate

• Developing resistance strategies

• One strategy is to try to identify hearing people’s perceptions of Deaf people, understand how they are developed, and how these vary across individuals and groups.

• Therefore researching those perceptions is crucial, hence this research project.

• But it is also important to test whether these perceptions can be changed, and how. That is the subject of this afternoon’s presentations.

Summary

• We distinguished scientific facts from fiction: the science is developing but not as fast as it would like.

• We explored media reporting of the clause 14.4.9 and identified how the powerful try to manufacture consent

• We identified that power is not absolute, it is mediated and always open to resistance.

• Now we are open for questions and comments

Final comment…

You can BE the media!

(indymedia)

(We don’t just mean important outlets such as See Hear! or BSL Zone)

Grumpy Old Deafies: http://www.grumpyoldeafies.com/

Limping Chicken: http://limpingchicken.com/

Federation of Deaf People: The Voice (now sadly no longer)