The relationship between genetic diagnosis,

identification of special educational needs,

pedagogical decision-making and action
Ruth Kershner
University of Cambridge Faculty of Education
rsk21@cam.ac.uk

This paper focuses on the educational implications of new understandings of

genetics, particularly in considering the ways in which information about genetic
syndromes associated with special educational needs (SEN) is transformed into the
knowledge required to inform and guide teaching decisions. The paper and
conference presentation refer to information available for teachers about genetic
syndromes like Down syndrome and Fragile X, contrasted briefly with teachers
knowledge about a universal characteristic gender which also has biological,
psychological and social elements. The aim is to begin to examine the relevance
and utility of genetic information for pedagogical decision-making and action.

The paper focuses on the following questions:

1) Does a rejection of the medical model of special educational needs mean that
genetic information about pupils is irrelevant to teachers?

2) What is or should be the educational use of genetic information about pupils?

3) How does genetic information about pupils help (or hinder) the processes of
pedagogical decision-making?

4) How can information about genetic factors best be presented and analysed when
considering the implications for identifying and responding to pupils educational
needs?

Does a rejection of the medical model of special educational needs mean that
genetic information about pupils is irrelevant to teachers?

In educational theory and practice the traditional medical model of special

educational needs (SEN) has run its course over the last century, and it has been
rejected fiercely by those focusing primarily on the development of inclusive schools
for all pupils. The possibility of engaging in straightforward diagnosis,
categorisation and prescription for certain types of handicap was challenged in the
UK from the 1970s by a growing understanding of the inevitable overlap between
categories, the potential problems of labelling, and the inadequacy of attempts to
differentiate special educational provision for particular individuals and groups of
pupils without infringing on educational progress, equal opportunities and human
rights. One of the main problems of diagnostic and categorical approaches has
been seen as the tendency to fix learning problems deterministically within the
child, and it is interesting that current research such as that by Hart et al (2004) on
the approaches of teachers who avoid ability labelling can even now in 2005 seem
to be so refreshing, insightful and necessary.
However, recent years have seen a revival of interest in identifying types or patterns
of SEN associated with increasingly socially visible syndromes such as dyslexia,
dyspraxia, autistic spectrum disorders (ASD) and attention deficit hyperactivity
disorder (ADHD). All of these are primarily identified in clinical or behavioural terms
rather than through medical tests, but there is a great deal of research interest in
causal mechanisms at biological level and in physical and medical interventions,
producing a growing body of information for teachers and parents about remedies
such as fatty acid supplements (Stordy, 2005). The increasingly sophisticated
scientific understanding of genetics has led to some strong support for incorporating
this knowledge into special education and services for adults with learning
disabilities (Barr, 2002; Denckla and Cutting, 2004; Hodapp and Fidler, 1999).
Attention is also given to the wide range of issues associated with genetic
counselling and other uses of genetic information for people with learning difficulties
and their families (Barr, 1999; Cunningham et al, 2000; Ward et al, 2002). Yet
researchers working in the fields of neuroscience, genetics and educational
psychology mainly provide evidence about the potential use of research findings
rather than the immediate and direct application of their work to educational
practices (Goswami, 2004; Plomin and Walker, 2003).

Much current research and practice in the field of SEN acknowledges the ways in
which certain biological factors may interactively affect (but not determine)
childrens development, behaviour and learning in particular contexts. This belief
connects with transactional models of child development and the combination of
biological and environmental risk factors (Sameroff, 1995; Empson, 2004). A bio-
psycho-social model has been applied in areas like ADHD as a framework for
understanding and intervention, which avoids the unhelpful polarity between
biological and social explanations of learning and behavioural problems (Cooper,
2005: 128). Cooper proposes that teachers need to assimilate knowledge about
ADHD into their practical theorizing and craft knowledge (p.125/132). This would
include the understanding of ADHD as a bio-psycho-social condition in which the
institutional structure and practices of school may themselves be implicated. An
awareness of the intrinsic assumptions and limitations of schooling may lead
teachers to attempt to intervene at policy level. For the most part, however, Cooper
argues that an understanding of the cognitive style of pupils identified as having
ADHD can help teachers to build effectively on the pupils learning characteristics
and preferences in classroom activities. Yet Cooper remarks that the reduction of
pupils behavioural symptoms through medication may divert the teacher from fully
adapting and innovating in classroom practice. This would seem to support the
view that teachers need to understand biological factors and medical interventions at
least enough to have an informed discussion about the child with professional
colleagues and parents.

The bio aspect of ADHD, commonly associated with medication, is not directly in a
teachers sphere of training, influence or responsibility, yet a bio-psycho-social
model implies the need for an integrated view about causal mechanisms and multi-
modal interventions. This principle could be applied more generally to pupils
identified as having SEN, replacing a simpler medical or bio-medical of SEN.
However it is not entirely clear exactly how the relevant biological information of
different sorts can be turned into usable knowledge by teachers, particularly when
the genetic or other biological origins can seem very distant from the individual pupil
in class.

What is or should be the educational use of genetic information about

pupils?
It is possible to map the connections between biological, cognitive and behavioural
aspects of development, .revealing what you could know but dont yet know
(Morton, 2005: 19). Morton also suggests that the tool of causal modelling (ie.
representing possible causal links between biology, cognition and behaviour),
enables you to establish both common ground and incompatibility with others with a
degree of precision (p.19). However, as Morton points out, a diagnosis of
developmental disorders for the purpose of guiding medical treatment or educational
intervention does not necessarily require an exact and complete understanding of
original causes (p.137-8). Morton gives the example of the treatment for a broken
leg not depending on how the leg was broken - although educational difficulties are
not so simple of course.

Genetic differences are particularly problematic in connecting cause, diagnosis,

identification of SEN, and decisions about educational provision. One reason is the
diversity of ways in which genes can be combined and expressed for individuals. In
her discussion of Williams syndrome, an identifiable genetic condition, Karmiloff-
Smith (2002) emphasises the developmental factor in tracing the cognitive and
behavioural outcomes for particular children and adults affected in this way ie. she
argues that the mappings between genes, cognition and behaviour are indirect, and
the situation at birth does not entirely predict what happens in later life. In
connection with this focus on development, and on the associated child-environment
transactions, neither quantitative genetic research (e.g. family, twin and adoption
studies) nor molecular genetic research (seeking particular gene-trait connections)
gets close enough to predicting individual progress and outcomes to provide recipes
for educational intervention by teachers. Although Plomin and Walker (2003:10)
argue that increasing knowledge about DNA risk indicators may begin to be used at
least in educational psychology research and practice.

There may, however, be two main barriers to the informed use of genetic
information by both educational psychologists and teachers depending on the
background and interests of the people involved. One problem is to do with the
specialised field of knowledge. Introductory textbooks (e.g. Ringo, 2004) explain the
workings of genes and chromosomes with reference to key components like nucleic
acids (DNA and RNA) and genetic mechanisms of development in terms of gene
expression and changes in genome structure, with detailed accounts of the
genetically regulated processes of cell proliferation, programmed cell death,
differentiation, and association of functionally related cells. We have to
acknowledge however that this is difficult material for many educators, calling for
selection, translation and summary when particular genetic syndromes are discussed
(e.g. as found on the Contact a Family website, www.cafamily.org.uk).

The second barrier could be to do with the linguistic and social aspects of knowledge
about genetics. Terminology can be important here. For example, the
determinism of genetic inheritance may be over-emphasised in the use of
language. Richardson (1998: 58) argues that genes do not express themselves, but
they .are best thought of as resources utilised by a dynamic system in a regulated
manner. What we inherit from our parents is not just a set of genes, and not a
genetic programme, but a whole developmental system which utilises genes as
resources. More generally, in the public view there may be associations between
different aspects of genetics which influence the ways in which genetic information is
received by teachers. Durant et al (1996) found that public responses to the
Human Genome Project showed dimensions of promise (e.g. forensic medicine;
genetic therapy) and concern (e.g. eugenics; discrimination), as well as references
to degrees of controllability. Durant et al comment that (p)ublic understandings
of science are important, not least because they are capable of exercising a powerful
influence over both scientific research and clinical practice (p. 236). It may be
reasonable to assume differences between teachers in their understanding, use of
and demand for genetic information about pupils in the context of wider beliefs and
concerns about genetics in society as well as the immediate professional
expectations and responsibilities.

How does genetic information about pupils help (or hinder) the processes
of pedagogical decision-making?

In educational terms the match between pupils characteristics and effective

teaching strategies has always been loose, although there is still a keen interest
amongst teachers in frameworks which may help to identify and respond to pupils
individual characteristics and preferences (cf. the current focus on learning styles
and multiple intelligences in many British schools). In the field of SEN, research
evidence about the effectiveness of different strategies is not clearly matched to
particular individuals and groups of pupils, although general information is available
on which approaches may help beyond ordinary teaching (e.g. Brooks (2002) on
literacy difficulties).

There is a more general question about what, if anything, is special about teaching
pupils identified as having SEN, including critical discussions of the special concept
itself (Adams, et al, 2000). Reviews of research on teaching strategies for pupils
with special educational needs (SEN) have acknowledged that certain individuals or
groups of children may need adaptations to general teaching approaches but not
qualitatively different methods, ie. there may be variations in the intensity of
application (Lewis and Norwich, 2005) and a need to understand how strategies are
best combined for pupils with SEN (Davis and Florian, 2004). Questions therefore
arise about the basis for these adaptations, including the degree to which such
decisions depend on teachers knowledge about patterns of strengths and
weaknesses typically associated with identified syndromes. For example, how
might research on the reading strategies of pupils with Down syndrome influence a
teachers approach to working with a specific pupil identified in this way? How
might this compare to knowledge that a pupil has been identified as dyslexic, usually
with assumed rather than clear biological origins?

One way to gain insight into teachers use of any personal information about pupils
is to consider a universal characteristic such as gender. In spite of the gap between
biological sex and social constructions of gender, this is on the whole a strongly
defined and differentiated category in education, to the extent that concerns are
regularly expressed about boys and girls relative levels of achievement. A recently
completed DfES research project on Raising Boys Achievement included an element
focusing on gender in the special school context (Kershner and Bearne, 2004). The
special school teachers involved in this research all emphasised their long-term focus
on pupils as individuals, incorporating a complex understanding of relevant social,
psychological, educational, behavioural and health-related aspects of their
development. However, their agreement to participate in the research involved a
willingness to ask questions about gender factors in their own schools balancing
awareness of group trends and shared characteristics amongst pupils with unique
knowledge of individuals.

There has long been awareness of the proportional over-representation of boys in

special education, but unlike in mainstream schools gender has not commonly
been a factor seen to be notably relevant to teaching and learning the special school
setting. Yet when the special school teachers began to consider boys
achievement, all were able to ask pertinent research questions either about
particular groups of boys or about gender as a general issue in that setting. For
example, three schools focused on small groups of boys in Years 9-11, developing
strategies for enhancing self-esteem, improving writing, and opening up
opportunities for inclusion. In one of these schools, when teachers and assistants
were asked whether gender is relevant in school, most said yes. However they gave
many different reasons and examples applying to different age groups and subjects,
including: opinions about traditional gender bias in some subjects such as design
technology; observed preferences for pupils to work in single sex groups;
observations of girls taking over in some practical activities; and beliefs about
boys independence, motivation, competitiveness, need for physical activity, and
reluctance to engage in new experiences such as the sensory nature table. All the
staff who felt that gender is relevant to teaching and learning could identify the
strategies they use in response ranging from modelling, encouragement and class
discussion to more direct and specific interventions such as regrouping pupils,
targeting rewards, and using visual approaches and ICT. The impression is that
gender is embedded in the thinking of many special school staff, but that it is closely
integrated with the other knowledge that guides each persons strategic decision
making and action in school. It is only when this practical knowledge is targeted,
analysed and shared that gender may emerge as a common concern appearing in
different guises.

This example of gender in the special school setting may help us to understand the
ways in which biological information about pupils is turned into pedagogical
knowledge in school. Gender is generally very visible as a means of distinguishing
pupils in any school setting. Its biological origins are hidden, although many adults
and children in society have a basic awareness of x and y chromosomes. Its
sociocultural associations may be taken for granted until brought into focus,
depending in school on whether other aims and values predominate (e.g. contrast
the aims of raising overall standards of attainment with focusing on pupils as
individuals). In some contexts it can be more simply a matter of scale - ie. sheer
numbers of boys and girls in larger schools allow stronger overall generalisations
about gender with some flexibility about individual expression to avoid stereotyping.
Gender may be associated with common assumptions and evidence about the
implications for teaching and learning, even though these are bound to apply to
some boys and some girls, not all (a point very evident in mainstream schools).

So in working with boys and girls, teachers are involved in transforming a general,
often highly socialised, perception and knowledge of gender into an understanding
of its application to individual pupils learning. This in turn is influenced by the
degree to which gender is seen to matter in the wider school context and whether it
is seen as an issue of interest or concern. Focusing on gender may prompt
innovation in school (such as single sex teaching; classroom seating arrangements;
curriculum development; mentoring; etc), but it cannot be known how each
individual boy or girl will respond (or whether something more effective could have
been done for them as individuals). Teachers constantly have to shift perspective
between the individual and the group, incorporating the specific and general
information about both into their teaching decisions with uncertain outcomes. We
might also expect similar processes to operate with regard to factors like age,
ethnicity, social background, and their interaction.

The question then arises about the effect of the additional knowledge that a pupil
has a genetic syndrome commonly associated with SEN, given that information is
communicated and decisions are made by people with different understandings of
childrens educational difficulties.

How can information about genetic factors best be presented and analysed
when considering the implications for identifying and responding to pupils
educational needs?

As we see in the examples presented at the conference, information about genetics

and SEN can be analysed at different levels and from different perspectives:

the language and imagery used

the research evidence about causal relationships and developmental aspects

the diversity and probability of effects in different contexts

However, teachers transformation of this information into the knowledge that can
inform teaching depends also on the signficance of the following factors:

the degree of visibility and physical signs in different syndromes

associated social, sensory and medical factors

family links (eg. inherited conditions)

emotional processes for all involved

the credibility and impact of different sources of information

In exploring the relationship between genetic diagnosis, identification of special

educational needs, pedagogical decision-making and action it seems appropriate to
focus on teachers individual and collective knowledge as a mediating factor. Lewis
and Norwich (2005: 210-213) identify four aspects of knowledge which may inform
pedagogical decisions:

knowledge of the nature of the special needs group

knowledge relating to oneself as a teacher

knowledge relating to the psychology of learning

knowledge of curriculum areas and general pedagogic strategies

They suggest that the first aspect, the nature of the special needs group, will act as
a filter for the other forms of knowledge. So the degree to which the nature of
special needs group is strongly defined will influence the degree to which the chosen
teaching strategy is seen to be very different and specialized. This argument is
important if teachers are presented with strong scientific knowledge about
aetiology, learning and behaviour patterns for whole groups of pupils, such as
children with Down syndrome (even though individual differences may soon become
evident in day-to-day contact). One response is to match strongly defined
information about genetic syndromes with equally scientific information about the
operation of risk factors and the nature of child-environment interaction in
development ie. emphasising the relevance of in-depth knowledge of how children
develop in context (cf. Lewis and Norwich (2005: 218) on implications for teachers
professional development). There is also the relevant knowledge and the skills
required for the more general challenge of coping with uncertainty in teaching and
responding contingently to pupils in class. In doing this we may learn from the
extensive research that already exists on teachers subject knowledge, including
work that emphasises the need to develop frameworks which allow the essential
conversation about knowledge that is often missing from dialogues between trainee
teachers and mentors for example (cf. Rowland, 2005).

Like pupils and their parents, teachers can find themselves at the centre of a loosely
constructed network of adults with varied involvement in the identification,
assessment and provision for pupils with SEN, and there is need to facilitate mutual
understanding and collaboration. For this reason it is necessary to ask about the
nature of the relevant scientific and medical information and how is communicated
to teachers. However, this is not a one-way process. A sociocultural perspective
suggests that knowledge is created through joint activity: ..(h)uman activity
produces the tools/artefacts through which it transforms itself (Daniels and Cole,
2002: 314). So a key element of developing understanding of the use of genetic
information with reference to the identification of special educational needs,
pedagogical decision-making and action lies in teachers investigation and sharing of
their experiences of individual childrens classroom learning - contributing in this way
to wider knowledge about the group in question.

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