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Ruth Fitzgerald’s paper to the Society for Medical Anthropology Annual Meeting – September 2009

In 2004 and 2005, Ruth Fitzgerald, a social science lecturer at Otago University, interviewed families connected to NZORD’s network to explore a range of issues affecting those with complex rare diseases in their family. Here is the abstract from one of the papers resulting from that work, focusing specifically on attitudes to pre-implantation genetic diagnosis. NZORD is pleased to have assisted this work by introducing families to Ruth. We value the exposure these issues have gained from these interviews. The article is entirely Ruth’s own work.

Abstract: 
In 
New 
Zealand, 
the 
activist 
group
 NZORD 
has 
been 
a 
persuasive
 voice
 for
 wider 
public 
access 
to 
genetic 
testing 
technologies 
for 
children. 
Their
 authority 
has 
rested 
on 
expert 
self‐taught 
genetic 
knowledge,
 able 
political
 networking,
 meticulous 
public 
document 
preparation 
and 
the 
explicit 
public
 articulation 
of 
their 
children’s 
suffering. 
This 
experiential 
authority 
has 
trumped
 alternative 
voices 
of 
experience 
(ie 
disability 
activist 
groups)
 wishing 
to 
restrict
 services
 such 
as 
pre‐implantation 
genetic 
diagnosis 
(PGD). 

However, 
interviews
 with 

individual 
NZORD 
members 
at 
the
 time 
of
 the 
group’s 
political 
lobbying
 revealed
 complex
 and
 contradictory
 understandings 
of PGD, its 
use 
within 
their
 families, 
its
 implications
 for
 personhood
 and
 the 
relationship 
between
 genetic
 difference
 and
 disability
 such
 that
 individuals
 were
 often 
unable to 
imagine 
its
 use 
for their 
own
 families.

 In 
such
 cases,
 ‘the 
right
 to 
choose’
 was
 seen
 as 
the
 overarching
 moral 
principle 
to 
accommodate 
such 
dissonance.
 This 
paper
 sketches
 the 
New
 Zealand 
cultural
 background
 of
 ‘the 
right 
to
 choose’
 and
 ponders
 whether
 a 
group
 identity
 such
 NZORD
 based
 on
 networked
 individualism
 represents
 a
 moral 
community
 in
 public
 decision
 making 
around
 PGD.

Read the full article in PDF form and MS Word format.