Abstract
Information of an individual’s epigenome can be useful in cancer screening to enable personalised decision making on participation, treatment options and further screening strategies. However, adding this information might result in complex risk predictions on multiple diseases, unsolicited findings and information on (past) environmental exposure and behaviour. This complicates informed consent procedures and may impede autonomous decision-making. In this article we investigate and identify the specific features of epigenetic risk-stratified cancer screening that challenge the current informed consent doctrine. Subsequently we describe current and new informed consent models and the principle of respect for autonomy and argue for a specific informed consent model for epigenetic risk-stratified screening programmes. Next, we propose a framework that guides the development of Patient Decision Aids (PDAs) to support informed consent and promote autonomous choices in the specific context of epigenetic cancer screening programmes.
Highlights
Screening programmes are important means in the prevention and early detection of several high-risk cancers [1,2,3]
If we would apply these conditions of an autonomous choice to informed consent in epigenetic cancer screening programmes, the patient should at least be informed about and understand the risks, benefits, harms associated with the test, and alternative screening options before consenting to the particular medical activity [23,24]
We argue for an informed consent model that is suitable to the context of epigenetic risk-stratified cancer screening
Summary
Screening programmes are important means in the prevention and early detection of several high-risk cancers [1,2,3]. Vos et al discussed that the design of current PDAs may not support autonomous decision making because (1) they often utilise explicit value clarification methods (VCM), which may lead to constructed preferences that are not congruent with one’s actual values, and (2) they mainly focus on deliberative processes instead of combining deliberation and intuition [12]. These findings have implications for PDAs in general, but these implications may be even more substantial for PDAs in epigenetic cancer screening given the additional challenges that are posed on informed consent in this context. We develop a framework that can serve as starting point for designing PDAs to be used within the process of obtaining informed consent, in the specific context of new epigenetic risk-stratified cancer screening programmes
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