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					Biomedicine Workshop – Genetic Tests


by Michele Grandolfo
Epidemiologist and Research Director
Department of Women's and Developmental Health
National Centre for Epidemiology and the Protection and Promotion of Health
Advanced Institute of Health, Rome

The current state of research in the field of biotechnology implies a biomedical model of
health that epidemiological research and epistemological reflections have seriously
The media and the information disseminated through them present this development as
humankind's glorious liberation from suffering, including death. No mention is ever made of
what percentage of the population may actually have access to the new
diagnostic/therapeutic technologies nor to theoretical and practical efficacy nor even to
specific and global risks.
Just one paradigmatic example. Today, no attention is paid to the positive predictive value of
a diagnostic test, even though that test is sensitive and specific to 95%, which is equal to 50%
(one out of two are false positives) when the prevalence of the condition to be detected is 5%
of the population. If that prevalence is 1%, then the positive predictive value is equal to 16%,
that is, five out of six are false positives.

The biomedical model of health, depicted with the new biotechnologies as predictive
medicine, implies at least three conditions:
         a) a directive relationship between the health professional and the citizen (always
considered as a "patient");
         b) diagnostic/therapeutic interventions carried out with the objective of "adapting" the
person to the conditions which sustain or promote his/her illness;
c) the continual production of "pathologies" (everyone has at least one alteration, although it
is not clear what reference is used nor by whom it was established) for which increasingly
invasive and expensive diagnostic/therapeutic interventions are proposed (in this sense, the
medicalisation of birth is exemplary); efficacy and appropriateness are discounted and
ridiculed and iatrogenic risks are not taken into consideration.

One not insignificant consequence of this phenomenon is uncontrolled increase in costs,
which are no longer sustainable by any public health system, with an inevitable transition to
privatisation. The result of this will be an increase in the effects of social inequality on health,
already increasing due to "structural adjustment" policies.
The tendency therefore is to impose a dominating technology as a tool to control people and

In the shining '70s of the last century, people and communities burst forcefully onto the stage,
winning the right to speak out and to represent their points of view directly:
         a) the women's movement imposed the gender issue and, at the Peking Conference,
proposed the revolutionary concept of empowerment, based on the strong affirmation that
people, women in particular, are not to be considered as vulnerable and constantly requiring
protection but rather as fully competent;
         b) the experience of homogeneous groups in the labour movement promoted the
development of occupational medicine on the basis of subjectivity;
         c) the Basaglia Law demonstrated that it was possible to liberate the mentally ill from
concentration-camp hell.
The arrival of individuals and communities on the scene had two significant consequences:
the social model of health (social determinants are the causes behind the biological causes of
health) and a demand for non-directive relationships. These relationships were to be
attentive to subjectivity and were intended to increase the potential of people and
communities to develop awareness and competencies enabling them to exercise autonomous
control over their own states of health.
A demand was made for quality relationships, based on respect, kindness, empathy and
compassion (not in the sense of facile commiseration but in the etymological sense according
to which compassion is the essence of the art of ethics and the foundation of democracy).
Services were requested that supported people and communities as the central players in the
process of change.

The 1996 Ottawa Charter was a product of this climate. It sanctioned the new frontier: the
promotion of health as a real process that empowers people and communities to exercise
control over their own states of health.

This amounted to a Copernican revolution, one systematically opposed by the majority of
health professionals and institutions. They were afraid of losing their power (power over
people, corporate power conditioning policy choices, since health professionals were also the
promoters of commercial interests and parties controlling large numbers of votes). This
power augmented the benefits they derived from their positions.

But how can we promote health and, above all, how do we evaluate the effectiveness of
health-promotion strategies?
We must encourage reflection on daily experiences and on the historical memory of people
and communities. Our action must be a vehicle for new, critically evaluated knowledge. It
must propose solutions (including all of the risks of error) for all of the alternatives, so that
people can make autonomous choices. We must communicate in ways that are be non-
directive, we must respect individuality be empathetic and compassionate.
Our action must involve (active offer) all of those who belong to the "target" population. Our
active offer must overcome the communication barriers inherent to the relational,
psychological, educational, social, ethical and anthropological dimensions. Once again,
people will accept our actions if we involve them and if we offer them respect, kindness,
empathy and compassion.
And how do we evaluate the effectiveness of a health-promotion strategy?
It is not possible to evaluate anything on the individual level. The effectiveness of a strategy
is evaluated by observing the reduction in the incidence of events or the prevalence of
conditions which would have occurred or become established had the strategy not been
applied. Any health theme may be considered. The choice of priorities must not take the
frequency, seriousness or urgency of the problem as much into consideration as the
possibility of intervention. Above all, we must consider the demonstrable efficacy of our
choices (the extent to which they increase the competence of professionals, the extent to
which they empower people and communities).
This implies that if we do not reach those sections of the population at greatest risk of
producing events and conditions that should be prevented, then our success rate will not
change significantly. The problem is that those most at risk, the dirty, the bad and the ugly
(those at risk of being labelled as victims), the socially deprived and powerless, are difficult to
reach and to involve. Their radical diversity with respect to the "norma" marginalises them
(and hence the importance of non-directive communication based on kindness, respect,
empathy and compassion). And this is the challenge for health professionals, who must
constantly and critically analyse their worldviews. Attentive listening, reflection on the "dregs
of society" and their determinants are the conditions for finding innovative paths and for
putting the creativity of health professionals to the test.

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