Biomedical Engineering Reference
In-Depth Information
Italian interviews were performed and to STINT, the Swedish Foundation
for International Cooperation in Research and Higher Education, who
fi nanced the research stay in the UK during which British interviews were
performed.
Notes
1 An ELSA-funded research project on ethical aspects of pre-implantation genetic
diagnosis and germ-line gene therapy. See Zeiler (2005).
2 The Swedish interviews were performed in Swedish, the British interviews in
English and most of the Italian ones in Italian. Some of the Italian interviewees
said that they spoke English very well and that they could speak English during
the interview. If so, we chose English as the language for these interviews. All
interviews were performed by me.
3 On 1 November 2004, the Human Fertilisation Embryology Authority, hereafter
referred to as HFEA, confi rmed that it had given permission for screening of
familial adenomatous polyposis coli, which can lead to colon cancer in early
adulthood.
4 Polar body biopsy is another method for PGD. It is performed before fertilisation
of an embryo. However, since the examples in this chapter only discuss PGD on
embryos, I will not describe the method for polar body biopsy here (see Zeiler
2005 for such a description).
5 Finally, some interviewees described infertility as a disease and as something that
was not normal. Infertile couples were contrasted with the 'normal' population.
This was the case when one interviewee explained that 'we' have understood
'IVF as infertile, as a handicapped group of people that we help' as opposed to
the 'normal' population. If so, for people with fertility diffi culties, using assisted
reproductive technologies would make them resemble the normal population.
They could, thanks to medicine, enhance their chances of receiving a biological
child.
6 I use the term 'personal, embodied experience' for the professional who had
experience of a particular genetic disease/disability in his own body, i.e. not
only experience of relatives, siblings or children with the disease. The latter
experience is of course personal, but not embodied in the sense I have in mind.
7 At this time, prenatal diagnosis was mostly used for diagnosis of Down's
syndrome or for foetal sexing for genetic conditions such as Duchenne's
muscular dystrophy, interviewees said.
8 PGD units in Britain and Sweden are centralised and only a few such units
exist. This, interviewees explained, had consequences for what took place in
the clinical encounters. Normally, when a couple wanted to use PGD and when
the medical professionals at their local hospital considered this as appropriate,
the professionals got in contact with the PGD unit and made sure that PGD
was available for that specifi c condition. In practice, according to some of the
interviewees, these structures (though important with regard to having national
control over what was offered, under what circumstances, and by what means)
resulted in couples needing to be very verbal and to sound as if they were
convinced that they wanted PGD, in order to be sent to PGD centres in the fi rst
place.
9 In his review of medical discourse on disability in international medical journals,
Tom Shakespeare identifi es 'narratives of tragedy' and 'narratives of optimism'
similar to the kinds of
narratives of life with genetic disease
that I have identifi ed
(Shakespeare 1999: 673-7).
