Risk communication in preventive medicine: Optimising the impact of DNA risk information
Lead Research Organisation:
King's College London
Department Name: Institute of Psychiatry
Abstract
Summary
There is growing interest in how genetic information might be used to motivate people to change their behaviour to reduce their risks of disease. But the few studies available show few motivating effects. Moreover, genetic information on risk may have perverse behavioural consequences if negative test results reduce engagement in health-directed behaviours. Given the personal nature of genetic information it should have potential to be more motivating than other types of risk information, particularly if it is presented in a way that makes sense to people given their existing ideas about genes and risk.
The aim of the proposed research is to explain how people respond to genetic risk information as a first step towards developing effective ways of communicating such information.
Three linked studies will be conducted. Two assess the risk of developing diseases in at risk populations (Crohn?s disease and cardiovascular disease). The third study assesses the risk of responding well to different types of prescription for a medicine (nicotine replacement therapy, being prescribed for smokers attempting to stop). In each study people have a risk assessment based either on assessing their genes or assessing another type of risk indicator. In each study people will be told what they can do to reduce their risks of disease (Studies 1 and 2) or increase the chances that their medicine will work (Study 3).
Relevance
Rapid developments in medicine and particularly genetics make it increasingly possible to predict preventable diseases. For this to lead to health improvements the information needs to be communicated to motivate people to relevant actions. The proposed research aims to understand, from the recipients? perspectives, how they make sense of genetic risk information and how this affects their subsequent behaviour.
Translation for the general public
A core feature of the proposed research is to learn how people make sense of genetic information on risk. The results of the research are intended to help doctors and other health professionals to communicate this information effectively both to those undergoing genetic testing and to the public more generally. The general public will be represented, along with other key stakeholders, at one of two workshops that will be organised as part of the research, one at the planning stage, and one towards the end. In addition our dissemination strategy (see Section 6 of the protocol) involves direct communication with user groups including general public representatives.
There is growing interest in how genetic information might be used to motivate people to change their behaviour to reduce their risks of disease. But the few studies available show few motivating effects. Moreover, genetic information on risk may have perverse behavioural consequences if negative test results reduce engagement in health-directed behaviours. Given the personal nature of genetic information it should have potential to be more motivating than other types of risk information, particularly if it is presented in a way that makes sense to people given their existing ideas about genes and risk.
The aim of the proposed research is to explain how people respond to genetic risk information as a first step towards developing effective ways of communicating such information.
Three linked studies will be conducted. Two assess the risk of developing diseases in at risk populations (Crohn?s disease and cardiovascular disease). The third study assesses the risk of responding well to different types of prescription for a medicine (nicotine replacement therapy, being prescribed for smokers attempting to stop). In each study people have a risk assessment based either on assessing their genes or assessing another type of risk indicator. In each study people will be told what they can do to reduce their risks of disease (Studies 1 and 2) or increase the chances that their medicine will work (Study 3).
Relevance
Rapid developments in medicine and particularly genetics make it increasingly possible to predict preventable diseases. For this to lead to health improvements the information needs to be communicated to motivate people to relevant actions. The proposed research aims to understand, from the recipients? perspectives, how they make sense of genetic risk information and how this affects their subsequent behaviour.
Translation for the general public
A core feature of the proposed research is to learn how people make sense of genetic information on risk. The results of the research are intended to help doctors and other health professionals to communicate this information effectively both to those undergoing genetic testing and to the public more generally. The general public will be represented, along with other key stakeholders, at one of two workshops that will be organised as part of the research, one at the planning stage, and one towards the end. In addition our dissemination strategy (see Section 6 of the protocol) involves direct communication with user groups including general public representatives.
Technical Summary
Background
There is growing interest in using genetic risk information to motivate people to engage in risk-reducing behaviours. DNA risk information has the potential to be more motivating than other types of risk information given its personalized nature, yet only a few studies to date support this. Moreover there are concerns that DNA based risk assessments may have unintended harmful consequences if negative (low risk) test results reinforce engaging in health-risk behaviours. We propose a novel integration of two models of health related behaviour (Protection Motivation Theory and Leventhal?s Self Regulation Model of Health and Illness) to guide the presentation of DNA based risk assessments and to provide theory-based explanation and prediction of responses to risk assessments based on genotype and phenotype.
Aim
The aim of the proposed research is to describe systematically, behavioural responses to DNA risk information as a first step towards developing effective ways of communicating such information to realize its health benefits.
Methods
Three linked studies are proposed in which DNA risk information is used to predict clinically salient outcomes that are potentially modifiable in ways that require individuals to act.
The experimental designs of the three studies are similar. Participants are randomly allocated to receive a risk assessment that either does or does not include a DNA test. Both qualitative and quantitative data are collected in each study. The studies differ in the participants involved, the type of risk assessments conducted and the behaviours indicated to reduce risk. In Study 1, smokers who are first degree relatives of patients with Crohn?s disease are informed how their identified risks of Crohn?s disease may be reduced by stopping smoking. In Study 2, first and second degree relatives of patients with Familial Hypercholesterolaemia are informed how their identified risks of cardiovascular disease may be reduced, by adhering to recommendations to take lipid lowering medication, alongside altering their diet and levels of physical activity, and if relevant, stopping smoking. In Study 3, following a risk assessment of responsiveness to nicotine replacement therapy (NRT), smokers are informed how their chances of stopping smoking may be enhanced by adhering to a tailored prescription of NRT.
Application
These timely and novel studies will form a basis for designing effective interventions aimed at facilitating behaviour change following the provision of a range of assessments of risk status, particularly those incorporating DNA based information, which will increasingly be used following such studies as Bio-bank.
There is growing interest in using genetic risk information to motivate people to engage in risk-reducing behaviours. DNA risk information has the potential to be more motivating than other types of risk information given its personalized nature, yet only a few studies to date support this. Moreover there are concerns that DNA based risk assessments may have unintended harmful consequences if negative (low risk) test results reinforce engaging in health-risk behaviours. We propose a novel integration of two models of health related behaviour (Protection Motivation Theory and Leventhal?s Self Regulation Model of Health and Illness) to guide the presentation of DNA based risk assessments and to provide theory-based explanation and prediction of responses to risk assessments based on genotype and phenotype.
Aim
The aim of the proposed research is to describe systematically, behavioural responses to DNA risk information as a first step towards developing effective ways of communicating such information to realize its health benefits.
Methods
Three linked studies are proposed in which DNA risk information is used to predict clinically salient outcomes that are potentially modifiable in ways that require individuals to act.
The experimental designs of the three studies are similar. Participants are randomly allocated to receive a risk assessment that either does or does not include a DNA test. Both qualitative and quantitative data are collected in each study. The studies differ in the participants involved, the type of risk assessments conducted and the behaviours indicated to reduce risk. In Study 1, smokers who are first degree relatives of patients with Crohn?s disease are informed how their identified risks of Crohn?s disease may be reduced by stopping smoking. In Study 2, first and second degree relatives of patients with Familial Hypercholesterolaemia are informed how their identified risks of cardiovascular disease may be reduced, by adhering to recommendations to take lipid lowering medication, alongside altering their diet and levels of physical activity, and if relevant, stopping smoking. In Study 3, following a risk assessment of responsiveness to nicotine replacement therapy (NRT), smokers are informed how their chances of stopping smoking may be enhanced by adhering to a tailored prescription of NRT.
Application
These timely and novel studies will form a basis for designing effective interventions aimed at facilitating behaviour change following the provision of a range of assessments of risk status, particularly those incorporating DNA based information, which will increasingly be used following such studies as Bio-bank.