Presentation given by Steve Emery at the 'Sleepwalking into Eugenics' conference at MShed, Bristol, 10th November 2012

1. 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

2. 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

3. 1. Introduction
Some news stories on genetic
developments and ‘miracle cures’
over the years

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

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

6. From: The Brisbane
Times, Australia
http://www.brisbanetimes.com.au/business/we-can-consign-deafness-to-history-businesswoman-of-the-year-20111011-1liw4.html

7. 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...

8. Deaf gerbils 'hear again' after stem cell
cure
By 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 Researchers hope they will be able to
rebuilt in gerbils - a UK study in the journal one day treat deafness with stem cells
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 2012
http://www.bbc.co.uk/news/health-19570024

9. 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!
Gene therapy: Glybera approved by
European Commission
By James Gallagher
Health 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.
Gene therapies alter a patient's DNA
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. Source: BBC News, 2 November 2012
http://www.bbc.co.uk/news/health-20179561

10. • 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/w
omens-health/for-patients/inherigen/

12. • 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?

13. 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/

14. 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?

15. • 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

17. 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)

18. 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

19. 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

20. 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.

21. A summary: look out for the following themes in
the following news items ?
Those who have
authority
How the Alternative
media Knowledge of
debate is
availability the discourses
‘framed’

22. Credit: TimesOnline

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

24. Credit: The Sun

25. http://englishplace.wetpaint.com/page/Choosing+a+Deaf+Child+is+Criminal
Credits: The Times; English Place

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

27. 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

28. 5. Power and Resistance
• 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...

29. Source: The Observer, 9 March 2008

30. • 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

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

32. 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….

33. http://www.bslzone.co.uk/bsl-zone/zoom-focus-the-end/
Credit: BSL Zone

34. • 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…

35. 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.

36. 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.

37. 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!

38. 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.

39. 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

40. 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)