Carter, Sarah Louise; (2006) The potential value and regulation of genetic tests for complex disease risk factors. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Within twenty years the technology used to identify genetic variations that confer susceptibility to complex diseases is likely to be sufficiently developed so that it can help guide individuals in their efforts to maintain healthy lifestyles. If the knowledge about one's genetic susceptibility to complex disease risk factors is shown to motivate people to become healthier it is important that this type of information is easily accessible. The current government agenda of promoting individual autonomy and responsibility for health suggests that genetic health risk information should be available in order for the public to use it to inform health-related decisions. The research presented in this thesis describes the issues discussed during a public consultation exercise on the availability of genetic testing services to the public. It also presents results of an experiment investigating the potential impact of genetic information, and the psychological factors which may influence this impact. The key findings were as follows: Complex disease risk information appears to encourage healthy behaviours, albeit to a greater extent in those already motivated to be healthy, with no apparent negative impact; Contrary to some groups' concerns, stakeholders were not worried that genetic information about complex disease risks would have any negative consequences in terms of employment or insurance discrimination; Stakeholders were concerned that the public do not understand well genetic and/or risk information, but it is likely that the public are sufficiently capable of comprehending these concepts; Stakeholders showed a 'cautious shift' in decision making. This could be related to a reluctance to hand over control of health to the individual or a genuine concern to protect a vulnerable minority of the population. The thesis discusses the potential impact of regulatory decisions on the principle of increasing individuals' responsibility for maintaining their health. It argues for a system of access which protects the minority of citizens who are at risk from misinterpreting genetic information and experiencing harm as a consequence, while imposing little or no harm or inconvenience on the majority of citizens.

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