WP7 - Integration, implications for public health and ethical, legal and social issues
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|Work package number||7||Start date or starting event: Month 1|
|Work package title||Integration, implications for public health and ethical, legal and social issues|
Description of work.
Task 7.1: Implications for population health (disease and death rates)
The first of these will be addressed by integrating the results of the risk prediction modelling from WP2 to evaluate the implications of individual risk prediction for risk stratification in the population (objective 1).
The second will be addressed firstly by using our knowledge of population screening programmes for early disease detection (e.g. breast mammography, PSA testing for prostate cancer) to compare the effectiveness and cost effectiveness (and efficiency) of screening programmes targeted at those at greater risk with untargeted programmes (objective 2). Included within this will be an investigation of the differential application of different screening technologies, such as the use of MRI scanning for breast cancer, screening for those at higher risk.
It is anticipated that these models will be initially developed over two years. However, as the results of the other work packages, which will impact on these models, will not be available until years 3 and 4 the aim is for the models to be sufficiently flexible to allow knew knowledge to be incorporated as it becomes available.
Task 7.2: Implications for health policy (screening and prevention)
A comprehensive list of relevant issues will be developed as part of the work package, but suggested questions to be addressed are:
The Research Associate will undertake most of the modelling work in Years 1 and 2 under the direction of Dr Paul Pharoah. The Steering Group will give supporting advice to the work on disease risk modelling and targeted prevention modelling (cost effectiveness etc) to ensure relevant aspects are included (objectives 1-3). During this time the Steering Group will also ensure that its multi-disciplinary members reach sufficient understanding of the underlying science and modelling work, begin to identify and discuss relevant implications, and research the experts from Europe who should be involved in the main Working Group.
In identifying key stakeholders the PHG Foundation will build on the close working relationships developed in Europe through its role as associated partner in the Public Health Genomics European Network (PHGEN) http://www.phgen.nrw.de. These relationships include professionals with an interest in Public Health Genomics in all European member states, applicant countries and EFTA-EFA countries as well as a large number of European and International cooperating institutes and networks including the European Society of Human Genetics and European Public Health Association. During year 1 the Steering Group will identify and invite relevant stakeholders for a wider international Working Group and organise the initial workshop. This will include experts in public health, the organisation and delivery of screening programmes, and other fields such as psychology, social science, law and ethics chosen to also provide representation across EU member states. It is hoped that this same Working Group will be involved in all three Workshops.
Workshop 1 (beginning year 2). The primary purpose of this workshop will be to inform and engage key stakeholders in the work, identify, discuss and prioritise main issues. For each of these, key questions for further analysis will be determined and, where appropriate, other experts and stakeholders identified. When the main modelling work is complete (end year 2), the Steering Group will provide a draft of a paper that includes an outline of the Population Health and ELSI issues.
Workshop 2 (beginning year 3). The primary purposes of this workshop will be the presentation and discussion of initial findings; the beginning of consideration of implications for screening and prevention policies; and agreement on any further analysis to inform recommendations Workshop 3 (beginning year 4). Discussion and agreement of final report with conclusions and recommendations.
D7.1 Participant list and report of first Steering Group meeting (month 3)