Abstract

Rouven Porz

‘The “Absurd” in the Field of Genetic Diagnosis ‘
Camus’ concept of absurdity offers a new and promising approach to medical ethics, especially in the field of genetic diagnosis:
Both prenatal diagnosis and an increasing number of postnatal genetic tests represent a new and rapidly growing field of molecular biomedicine. This field gives rise to new forms of molecular body knowledge and new forms of decision-making situations, both in normal pregnancy and in specific cases of inherited family diseases.
In this paper I will discuss how both the ‘new genetic knowledge’ of the body and the ‘decision-making situations’ may present existential life situations for affected persons. These situations may be perceived, either consciously or unconsciously, as ‘absurd’ (in the sense of which the term is used by Albert Camus). Further, I want to emphasise that the process of decision-making and integration may itself lead to feelings of alienation. For example, questions about the meaning of one’s own existence and the fatefulness of the illness may be raised. The new genetic knowledge may force those affected to restructure their own identity over the passage of time. My talk will be based on empirical interview data from our qualitative study “Time as a contextual element in ethical decision-making in the field of genetic diagnosis” (Swiss National Science Foundation).
From a temporal perspective both making the decision (for or against a genetic test) and the subsequent integration of the new information takes place over a period of time that varies from patient to patient. Relating this to the work of Albert Camus I argue that only a situation being experienced in the present can be perceived and described as ‘absurd’. Retrospectively the interviewees generally succeed in giving a narrative meaning to their past ‘absurd experiences’.
From an ethical perspective I will stress that my re-evaluating of Camus’ work offers new strategies for addressing some important theoretical topics in medical ethics (such as patients’ autonomy and informed consent). Questions are raised, for example, how to make an autonomous decision when you are stuck in an ‘absurd’ life situation and how to sign ‘rationally’ an informed consent-sheet when you feel ‘alienated’. Considering these questions has clear implications for the everyday practice of medicine.


	Rouven Porz ‘The “Absurd” in the Field of Genetic Diagnosis ‘ Camus’ concept of absurdity offers a new and promising approach to medical ethics, especially in the field of genetic diagnosis: Both prenatal diagnosis and an increasing number of postnatal genetic tests represent a new and rapidly growing field of molecular biomedicine. This field gives rise to new forms of molecular body knowledge and new forms of decision-making situations, both in normal pregnancy and in specific cases of inherited family diseases. In this paper I will discuss how both the ‘new genetic knowledge’ of the body and the ‘decision-making situations’ may present existential life situations for affected persons. These situations may be perceived, either consciously or unconsciously, as ‘absurd’ (in the sense of which the term is used by Albert Camus). Further, I want to emphasise that the process of decision-making and integration may itself lead to feelings of alienation. For example, questions about the meaning of one’s own existence and the fatefulness of the illness may be raised. The new genetic knowledge may force those affected to restructure their own identity over the passage of time. My talk will be based on empirical interview data from our qualitative study “Time as a contextual element in ethical decision-making in the field of genetic diagnosis” (Swiss National Science Foundation). From a temporal perspective both making the decision (for or against a genetic test) and the subsequent integration of the new information takes place over a period of time that varies from patient to patient. Relating this to the work of Albert Camus I argue that only a situation being experienced in the present can be perceived and described as ‘absurd’. Retrospectively the interviewees generally succeed in giving a narrative meaning to their past ‘absurd experiences’. From an ethical perspective I will stress that my re-evaluating of Camus’ work offers new strategies for addressing some important theoretical topics in medical ethics (such as patients’ autonomy and informed consent). Questions are raised, for example, how to make an autonomous decision when you are stuck in an ‘absurd’ life situation and how to sign ‘rationally’ an informed consent-sheet when you feel ‘alienated’. Considering these questions has clear implications for the everyday practice of medicine.