Informed choice is increasingly recognised as important in supporting patient autonomy and ensuring that people are neither deceived nor coerced. In cancer screening the emphasis has shifted away from just promoting the benefits of screening to providing comprehensive information to enable people to make an informed choice. Cancer screening programmes in the UK now have policies in place which state that it is their responsibility to ensure that individuals are making an individual informed choice. There is a need to evaluate (...) whether such policies mean that those people invited for screening are making informed choices, and how comprehensive information affects other variables such as uptake, cost effectiveness, and satisfaction. At the present time, there is no validated measure of informed choice in cancer screening. Such a measure could be used to evaluate the effectiveness of interventions to increase informed choice and levels of informed choice in a population invited for screening. It could encourage health professionals to be accountable. Factors important when measuring informed choice in cancer screening include an individual’s understanding of the limitations of screening, the ability to make an autonomous choice, and the difference between choice and behaviour. (shrink)

With the rapid development of genetic research and applications in health care there is some agreement among funding and regulatory bodies that the public(s) need to be equipped to deal with the choices that the new technologies will offer them, although this does not necessarily include a role for the public in influencing their development and regulation. This paper considers the methods and purpose of public consultations in the area of genetics including large-scale surveys of opinion, consensus conferences and focus (...) groups. Consultation has been undertaken to enable the researchers/policy makers to see what the public do not know and plan more public education to make up the deficiency, to check on areas of concern so that public education can be used to address them or to gain a public mandate for a planned policy. An alternative and more recent approach is to find out what the public(s) do know and understand and to see how experts can learn from them in order to get a fuller view of technology in use. (shrink)