Biomedical Engineering Reference
In-Depth Information
been informed as part of the research project.) The woman in the following
example argues that she was not aware that she was going to receive any risk
information immediately after the scan:
CECILIA:
(28, risk score 1:227) I can't remember that anybody told me that I
was going to get this kind of a high risk or low risk fi gure at once, right
there, or what it could mean and in what way I could proceed afterwards
depending on the information we had, so I was quite taken, neither
Henrik or myself were quite prepared, even if it was not a catastrophe
or anything.
Also, the high risk information was diffi cult to understand, in the sense
of actually catching what the midwife was saying. Some women argued that
even if they could hear what the midwife was saying, it was still diffi cult to
understand the meaning of the high risk information. What did chromosome
abnormality actually mean? The relationship to Down syndrome was
not always clear. For instance, Cecilia said that she did not know if the
chromosome abnormality could affect the baby in other ways, and she felt
'very stupid'. Even if most women seemed to know that the midwife would
calculate a risk score based on measurements of the neck of the foetus and
the mother's age, this still did not make it easy to understand:
BEATRICE:
(32, risk score 1:219) I knew she was going to calculate, and she
explained very well, I think, very clearly how it is done. I don't remember
exactly how they do it, but it is something about the neck and my own
age and, but ... I think that was very clear and easy to understand, but
then there isn't much more you know, as it is an examination, exactly
what it depends on, that is a bit diffi cult to understand.
The issue of the risk score as high or low emerges in all interviews.
Typically, a fi rst reaction to the risk score in itself, as either low or high, is
followed by a re-interpretation where for example the low is understood as
high or vice versa. In their accounts, most of the women
move back and forth
between talking about
the risk as high or
low
. Daniela, 26, says 'So even if I
had a risk factor of 1:238, it became something very big, even if it perhaps
wasn't so big. Others have even higher risk factors, more to worry about'.
She goes on to say 'The risk could have been bigger, it could have been 1:20
or 1:4 or whatever, but now it is 1:238, and that is a small risk even if it is
a risk'. In the following example, it becomes even more clear how Beatrice
moves back and forth between seeing the risk as high or low:
BEATRICE:
(32, risk score 1:219) And then it was diffi cult to understand,
even if it is called a high risk, it isn't actually a very high risk. I ended up
on 1 to 219, but as it is called a high risk, it feels as if ohh, this is a high
risk, but it is actually not such a high risk (Later Beatrice continues:) I
