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Ethics of prevention: An interactive computer-tailored program

Department of Healthcare Ethics and Philosophy, Health Care Sciences, Maastricht University, Maastricht, the Netherlands, R.vanhooren{at}ZW.unimaas.nl

Bart W. Van Den Borne

Department of Health Education and Health Promotion, Health Sciences, Maastricht University, Maastricht, the Netherlands

Leopold M.G. Curfs

Department of Clinical Genetics, Academic Hospital Maastricht/Department of Health Care Sciences, Maastricht University, Maastricht, the Netherlands

Guy A.M. Widdershoven

Department of Healthcare Ethics and Philosophy, Health Care Sciences, Maastricht University, Maastricht, the Netherlands

Aim: This article describes the contents of an interactive computer-tailored program. The program is based on previous studies of the practice of care for persons with Prader-Willi syndrome. This genetic condition is associated with a constant overeating behaviour with the risk of obesity. The aim of the program is to start a process of awareness, reflection, and discussion by caregivers who are confronted with the moral dilemma of respect for autonomy versus restricting overeating behaviour. The program focuses on values (such as health and well-being) that are relevant to caregivers in daily practice. Furthermore, the focus is on various ways of interaction with the client. Caregivers were expected to focus mainly on health, and on both paternalistic and interpretive/deliberative forms of interaction. Methods: Sixteen professionals and 12 parents pilot-tested the program contents. With a pre-test, responses on one central case were collected for tailored feedback; with a post-test, the effects of the program were measured. Results: Significant correlations were found between the values of autonomy and consultation and between autonomy and well-being. In contrast to our expectations respondents valued all categories (autonomy, consultation, health, well-being, and liveability for others) as equally important in the pre-test. No significant changes in scores were found between pre- and post-test. The open answers and remarks of participants support the program contents. Conclusions: Participants' responses support previous research findings, advocating a concept of autonomy in terms of positive freedom, through support by others. The promotion of the client's self-understanding and self-development is central in this concept.

Key Words: Autonomy • computerized tailoring • deliberation • education • ethics • Prader-Willi syndrome • prevention of obesity • self-development

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