Difficult Questions and Ambivalent Answers on
Genetic Testing
By Andréa Wiszmeg, Susanne Lundin, Eva Torkelson, Niclas Hagen &
Cecilia Lundberg
Abstract
A qualitative pilot study on the attitudes of some citizens in southern Sweden
toward predictive genetic testing – and a quantitative nation wide opinion poll
targeting the same issues, was initiated by the Cultural Scientific Research Team
of BAGADILICO. The latter is an international biomedical research environment
on neurological disease at Lund University. The data of the two studies
crystallized through analysis into themes around which the informants’ personal
negotiations of opinions and emotions in relation to the topic centred: Concept of
Risk,‘Relations and Moral Multi-layers, Worry, Agency and Autonomy, Authority,
and Rationality versus Emotion. The studies indicate that even groups of people
that beforehand are non-engaged in the issue, harbour complex and ambivalent
emotions and opinions toward questions like this. A certain kind of situation
bound pragmatism that with difficulty could be shown by quantitative methods
alone emerges. This confirms our belief that methodological consideration of
combining quantitative and qualitative methods is crucial for gaining a more
complex representation of attitudes, as well as for problematizing the idea of a
unified public open to inquiry.
Keywords: Genetic testing, risk, public attitude, responsibility, complexity,
ambivalence
Wiszmeg, Andréa, Susanne Lundin, Eva Torkelson, Niclas Hagen & Cecilia Lundberg: ‘Difficult
Questions and Ambivalent Answers on Genetic Testing’, Culture Unbound, Volume 4, 2012: 463-
480. Hosted by Linköping University Electronic Press: http://www.cultureunbound.ep.liu.se
,Introduction
Ulrich Beck (1992) declares that the proliferation of risks is the hallmark of our
current situation. Whereas dangers in the pre-industrial society ‘assaulted the nose
or the eyes and were thus perceptible to the senses, the risks of civilization today
typically escape perception’ (Beck 1992: 21). The expansion of these unseen and
abstract hazards constitutes a shift wherein a new cultural and social formation
can be seen: the risk society (Beck 1992; Mythen 2007). In relation to the prolif-
eration of risks, this late modern configuration has partly removed the collectivist
risk management of the traditional welfare state, favouring a form of prudential-
ism where the individual is responsible for managing risks (O’Malley 1996: 197).
In today’s biosociety, the responsible individual is seen as someone who takes
rational steps to avoid and insure against risk. This is done in order to become
independent, and to avoid becoming a burden for others. Hence, a rational self-
interest and risk management is articulated as an everyday practice of the self
(O’Malley 1996: 200). In addition, in today’s biosociety, and parallel to the
cultural, social and political development; scientific development within genetics
and genomics has produced an increased knowledge about human genetics. This
scientific development has created new possibilities for diagnostic prediction by
means of using genetic tests. Subsequently, genetics and genomics is placed
within a general discourse of disease prevention, illustrated by the advent of such
sub-disciplines as public health genomics and community genetics (cf. Khoury et
al. 2000).
Previous research have shown that methods such as the use of genome analysis
and genetic testing will alter the individuals’ self-understanding as much as it
changes the health system and how society treats disability and illness (cf. Novas
& Rose 2000; Lemke 2004). As preventive medicine intersects with genetic
research and technology (Arnoldi 2009: 100), it makes the responsibility for one’s
genes and the risks they might encompass a personal and individual obligation.
Genetics and genomics seem to give rise to reactions that contradict the rational
and prudent responses about responsibility that are proclaimed within today’s
biosociety. Our point of departure in this article is that scientific understanding
and evaluations of risk seem to be incompatible with those representations that are
invoked by lay-men in their everyday life. Genetics is deeply connected to human
emotions and moral beliefs.We draw on our own previous research as well as on
broad multidisciplinary discussions (Wexler 1996; Lundin & Åkesson 2002;
Ferreira & Boholm 2005; Franklin 2006; Liljefors, Lundin & Wiszmeg in press).
We are interested in what happens when genetic risk assessment enters the realm
of everyday life and matters of the body. How do people perceive risk, and which
strategies will the individual be in need of? We use the concept of risk perception
464 Culture Unbound, Volume 4, 2012
, in Beck’s sense, that is to describe why people define and sense risk and threats in
different ways (Beck 1992).
The article aims to explore how people relate to and talk about situations that
arise in relation to genetics and genomics. This is done on the basis of two studies
conducted by the authors: the qualitative survey Knowledge of Disease (2010),
and the nationwide opinion poll Public Research – Genetic Diseases (2011). The
authors belong to the cultural, social, and natural sciences, which means that we
also lean on previous qualitative and quantitative studies (Lundin 2002; Lundin &
Idvall 2003; Torkelson 2007 et al.; Lundberg et al. 2008; Hagen 2011).
It is our ambition to present how the presumed individualized responsibility of
avoiding and preventing perceived risks is expressed on an individual level. We
look at how this gradual shift in the discourse creates multiple layers of attitude
and opinion in the individual (Bauman 1993; Frank 1995). Our studies point to
instances of ambivalence in people’s accounts regarding experimental biomedical
research and predictive genetic testing, when discussed on a general level. We
want to emphasize the methodological and political importance of paying
attention to such ambivalence. This also means that we call for a more thorough
consideration of the methods used for gathering data for ethical discussion and
drawing up guidelines in modern biomedical research. Hence, in our discussion
we wish to problematize the idea of a general public (cf. Ideland & Lundin 1997;
Gottweis 2008; Hansson et al., 2011; Plows 2011). The idea of a one-dimensional
public united by opinion is highly problematic. The ignorance of the existence of
ambivalence may, in fact, help legitimize this false and simplified picture.
We will begin with a section that accounts for the methods that were employed
in order to obtain our empirical material. The subsequent five sections will present
and elaborate on this empirical material. In the last section, we address the
question of a unified public in conjunction with genetics and genomics within the
late-modern risk society.
Methods
Our discussion relies partly on a qualitative empirical study of the attitudes of a
number of citizens in southern Sweden with regard to risk- and predictive genetic
testing. This survey, LUF 232 – Knowledge of Disease (2010), was conducted by
means of an open-ended questionnaire, distributed among 122 previously
volunteering respondents of the Folklife Archive at Lund University, who receive
questionnaires on different themes 3-4 times a year.1 Our article also relies on the
subsequent quantitative nationwide opinion poll Public Research – Genetic
Diseases (2011) that explores the same theme as the survey, and aims at capturing
ethical and moral dilemmas on these issues to a greater extent than quantitative
surveys traditionally do. (For methodological details, See appendix, p.16) We
chose this methodological design in order to make the opinion poll as nuanced as
Culture Unbound, Volume 4, 2012 465
Genetic Testing
By Andréa Wiszmeg, Susanne Lundin, Eva Torkelson, Niclas Hagen &
Cecilia Lundberg
Abstract
A qualitative pilot study on the attitudes of some citizens in southern Sweden
toward predictive genetic testing – and a quantitative nation wide opinion poll
targeting the same issues, was initiated by the Cultural Scientific Research Team
of BAGADILICO. The latter is an international biomedical research environment
on neurological disease at Lund University. The data of the two studies
crystallized through analysis into themes around which the informants’ personal
negotiations of opinions and emotions in relation to the topic centred: Concept of
Risk,‘Relations and Moral Multi-layers, Worry, Agency and Autonomy, Authority,
and Rationality versus Emotion. The studies indicate that even groups of people
that beforehand are non-engaged in the issue, harbour complex and ambivalent
emotions and opinions toward questions like this. A certain kind of situation
bound pragmatism that with difficulty could be shown by quantitative methods
alone emerges. This confirms our belief that methodological consideration of
combining quantitative and qualitative methods is crucial for gaining a more
complex representation of attitudes, as well as for problematizing the idea of a
unified public open to inquiry.
Keywords: Genetic testing, risk, public attitude, responsibility, complexity,
ambivalence
Wiszmeg, Andréa, Susanne Lundin, Eva Torkelson, Niclas Hagen & Cecilia Lundberg: ‘Difficult
Questions and Ambivalent Answers on Genetic Testing’, Culture Unbound, Volume 4, 2012: 463-
480. Hosted by Linköping University Electronic Press: http://www.cultureunbound.ep.liu.se
,Introduction
Ulrich Beck (1992) declares that the proliferation of risks is the hallmark of our
current situation. Whereas dangers in the pre-industrial society ‘assaulted the nose
or the eyes and were thus perceptible to the senses, the risks of civilization today
typically escape perception’ (Beck 1992: 21). The expansion of these unseen and
abstract hazards constitutes a shift wherein a new cultural and social formation
can be seen: the risk society (Beck 1992; Mythen 2007). In relation to the prolif-
eration of risks, this late modern configuration has partly removed the collectivist
risk management of the traditional welfare state, favouring a form of prudential-
ism where the individual is responsible for managing risks (O’Malley 1996: 197).
In today’s biosociety, the responsible individual is seen as someone who takes
rational steps to avoid and insure against risk. This is done in order to become
independent, and to avoid becoming a burden for others. Hence, a rational self-
interest and risk management is articulated as an everyday practice of the self
(O’Malley 1996: 200). In addition, in today’s biosociety, and parallel to the
cultural, social and political development; scientific development within genetics
and genomics has produced an increased knowledge about human genetics. This
scientific development has created new possibilities for diagnostic prediction by
means of using genetic tests. Subsequently, genetics and genomics is placed
within a general discourse of disease prevention, illustrated by the advent of such
sub-disciplines as public health genomics and community genetics (cf. Khoury et
al. 2000).
Previous research have shown that methods such as the use of genome analysis
and genetic testing will alter the individuals’ self-understanding as much as it
changes the health system and how society treats disability and illness (cf. Novas
& Rose 2000; Lemke 2004). As preventive medicine intersects with genetic
research and technology (Arnoldi 2009: 100), it makes the responsibility for one’s
genes and the risks they might encompass a personal and individual obligation.
Genetics and genomics seem to give rise to reactions that contradict the rational
and prudent responses about responsibility that are proclaimed within today’s
biosociety. Our point of departure in this article is that scientific understanding
and evaluations of risk seem to be incompatible with those representations that are
invoked by lay-men in their everyday life. Genetics is deeply connected to human
emotions and moral beliefs.We draw on our own previous research as well as on
broad multidisciplinary discussions (Wexler 1996; Lundin & Åkesson 2002;
Ferreira & Boholm 2005; Franklin 2006; Liljefors, Lundin & Wiszmeg in press).
We are interested in what happens when genetic risk assessment enters the realm
of everyday life and matters of the body. How do people perceive risk, and which
strategies will the individual be in need of? We use the concept of risk perception
464 Culture Unbound, Volume 4, 2012
, in Beck’s sense, that is to describe why people define and sense risk and threats in
different ways (Beck 1992).
The article aims to explore how people relate to and talk about situations that
arise in relation to genetics and genomics. This is done on the basis of two studies
conducted by the authors: the qualitative survey Knowledge of Disease (2010),
and the nationwide opinion poll Public Research – Genetic Diseases (2011). The
authors belong to the cultural, social, and natural sciences, which means that we
also lean on previous qualitative and quantitative studies (Lundin 2002; Lundin &
Idvall 2003; Torkelson 2007 et al.; Lundberg et al. 2008; Hagen 2011).
It is our ambition to present how the presumed individualized responsibility of
avoiding and preventing perceived risks is expressed on an individual level. We
look at how this gradual shift in the discourse creates multiple layers of attitude
and opinion in the individual (Bauman 1993; Frank 1995). Our studies point to
instances of ambivalence in people’s accounts regarding experimental biomedical
research and predictive genetic testing, when discussed on a general level. We
want to emphasize the methodological and political importance of paying
attention to such ambivalence. This also means that we call for a more thorough
consideration of the methods used for gathering data for ethical discussion and
drawing up guidelines in modern biomedical research. Hence, in our discussion
we wish to problematize the idea of a general public (cf. Ideland & Lundin 1997;
Gottweis 2008; Hansson et al., 2011; Plows 2011). The idea of a one-dimensional
public united by opinion is highly problematic. The ignorance of the existence of
ambivalence may, in fact, help legitimize this false and simplified picture.
We will begin with a section that accounts for the methods that were employed
in order to obtain our empirical material. The subsequent five sections will present
and elaborate on this empirical material. In the last section, we address the
question of a unified public in conjunction with genetics and genomics within the
late-modern risk society.
Methods
Our discussion relies partly on a qualitative empirical study of the attitudes of a
number of citizens in southern Sweden with regard to risk- and predictive genetic
testing. This survey, LUF 232 – Knowledge of Disease (2010), was conducted by
means of an open-ended questionnaire, distributed among 122 previously
volunteering respondents of the Folklife Archive at Lund University, who receive
questionnaires on different themes 3-4 times a year.1 Our article also relies on the
subsequent quantitative nationwide opinion poll Public Research – Genetic
Diseases (2011) that explores the same theme as the survey, and aims at capturing
ethical and moral dilemmas on these issues to a greater extent than quantitative
surveys traditionally do. (For methodological details, See appendix, p.16) We
chose this methodological design in order to make the opinion poll as nuanced as
Culture Unbound, Volume 4, 2012 465
