Health, Risk and Ethics in the Biotech Era




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НазваниеHealth, Risk and Ethics in the Biotech Era
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64 SEPPO POUTANEN
differences in socio-demographic variables between participants and decliners’
(Hietala 1998:55).
Although the decliners expressed more critical attitudes on genetic testing
(e.g. pointing to unnecessary anxieties), the women in both groups agreed that
pregnancy was not the best time for such a thing. Instead, they considered the
family planning period more optimal (Hietala et al. 1998). Hietala states that
several disorders in the Finnish disease heritage might reasonably be included in
genetic screening with AGU. According to her, the proper performance of future
screening will require giving adequate information to possible participants in all
relevant contexts, and careful consideration of the purpose and the psychosocial
and ethical aspects of each programme by performing professionals (Hietala
1998).
How an argument for offering Bayesian decision analysis to
intended subjects of genetic screening can be derived from
medical and social scientists’ views
Recommendation to distribute more genetic and related
information
The point of departure for my analysis in the rest of this chapter is the premise
that there prevails a certain agreement among the geneticists and some of those
Finnish social scientists who have studied genetics-related phenomena. The
agreement is expressed not only by Aula and Leisti (1994) and Hietala (1998),
but also by Jallinoja et al. (1998) and Jallinoja and Aro (2000) as a
recommendation of this kind: the general public/school pupils/pregnant women/
nurses in maternity care/other performing professionals should get more factual/
ethical/other kinds of information on the nature of genetics/genetic screening. The
recommendation may seem unproblematic and ethically sound, but I show how
more genetic information is prone to intensify the puzzling nature of some
situations involving choice. I assume it to follow from standard bioethics that
people who face such difficult choices should be helped, and I introduce
Bayesian decision analysis as an aid that seems appropriate.
First, Aula and Leisti base the recommendation both on their goal of fighting
hereditary diseases and on the recommendations of CAHBI (1991: CAHBI is the
ad hoc Committee of Experts on Bioethics under the Council of Europe), which
stress the voluntary nature of screening and respect for participants’ autonomy.
Second, Hietala agrees with the stated moral principles, but in addition she and
her research team can refer to their questionnaire studies. For instance, regarding
knowledge gaps, five of the twenty-five women who were found to be carriers of
the AGU gene mutation and who responded to the questionnaire thought that
they had not got enough information before the test (Hietala et al. 1998).

THE FLRST GENETIC SCREENING IN FINLAND 65
In the social scientific research, a central subject of discussion has been the
attitudes of Finns towards genetic testing. Jallinoja et al. (1998) found
contradictory attitudes, sometimes taken by the same individuals, and a
recommendation is therefore given that ‘it is important that health professionals…
help their clients cope with contradictory feelings and help them find an
acceptable solution for their specific life situation’ (Jallinoja et al. 1998:1372). In
another study, Jallinoja and Aro (2000) examined Finns’ comprehension of basic
genetics. The researchers then analysed the relationship between levels of
knowledge and attitudes towards gene tests. In their conclusions, they
recommend that, in addition to improving everybody’s ability to seek and
understand genetic knowledge, citizens should also be provided with ‘tools to
perceive and discuss potential ethical and social problems, which…genetic
testing and screening bring along’ (Jallinoja and Aro 2000:29).
Possibilities to improve the information distributed to
subjects of the AGU screening
Mothers who were the intended subjects of the AGU pilot screening were told
about the matter during their first visit to a maternity care unit, or they got an
information leaflet by post afterwards (Hietala et al. 1996). The leaflet discloses
these facts, for example:
• 2 per cent (1 in 50) of Finns carry the AGU gene defect
• only about 200 people have ever been found to suffer from the AGU disease
in Finland
• if both a child’s parents carry the gene defect, then she/he has a one in four
risk of inheriting the defect from both her/his parents and thus becoming ill
with the AGU disease
• there is a test that can find the gene mutation in healthy carriers
• the AGU disease can be detected prenatally from a foetus by examining the
placenta or amniotic fluid (Hietala 1998).
Accordingly, the leaflet gave probabilities that range from quite large (one in
four) to obviously rather small (in the light of the given facts, the probability of
having a child with the AGU disease is approximately 1/50 × 1/50 × 1/4 = 1/10,
000 for most native Finns), but the women were presented with apparent
certainties, too: a test will find the gene mutation, and there are methods to
decide whether a foetus has got the disease. As regards these probabilities, their
interpretation is clearly no straightforward matter, but if the leaflet had been
more detailed, that is, if the women had received more information, the facts that
needed grasping would essentially have become more complicated.
To start with the first fact in the leaflet, different studies have actually given
different values to the carrier frequency of the AGU gene mutation among Finns,
the range having varied from 1/30 to 1/70 (Syvänen et al. 1992; Hietala et al.
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