Objectives, deliverables and milestones for Unit 6

Objectives

• Work on the ethical mapping and analysis of existing guidelines and attitudes regarding the genetic testing of minors/persons not competent to consent, and elaborate new propositions for guidance in a European context
• Identify and analyze the patient rights in the 27 EU member states and look at the implications for genetic services in the light of the European harmonization process
• Link Eurogentest to the parent and patient-based support groups and the impact that a genetic diagnosis has on their lives.
• Identify and develop quality educational materials and ethico-legal guidance at the appropriate level to facilitate the education and training of healthcare personnel, patients and families and groups representing patient interests.
• Have an important exchange with both the support units and on the Quality units of Eurogentest (quality of information sources, attitudes to the use of personal genetic information, access to services, response to genetic counselling services, speed of response of laboratory services, etc).
• Identify minimum levels of competencies for healthcare professionals and will raise awareness within each EC member state to update national curricula with new genetic topics relevant the each professional activity in healthcare
• Raise awareness of public, policy makers and politicians of the importance of genetic education with particular relevance to ethical and legal aspects
• Make an inventory of existing guidelines (with a focus on the genetic testing of minors) on different forms of genetic testing in Europe and to make this information accessible to fellow researchers.To investigate and analyse genetic and ethical literature with regard to carrier and predictive genetic tests in minors, and to present the results.
• Draft recommendations on the genetic testing in minors.
• Collect and analyze the results of the survey on 1) the status of the European Convention on Human Rights and Biomedicine and 2) the status of patients’ rights/users of genetic services contained in the European Convention: how have these provisions been understood and applied in the Member States.
• Evaluate the readiness of the Member States to adopt a common framework for the protection of the rights of patients/users of genetic services.

Ethical issues

Deliverables

D6.3/3/1

Submission of a publication: systematic review on the attitudes towards predictive genetic testing in minors

D6.3/3/2

Publication of the survey regarding European counselors and the genetic testing of minors: carrier testing

D6.3/3/3

Publication of the survey regarding European counselors and the genetic testing of minors: predictive genetic testing

Milestones

M6.3/3/1

Data collection of survey is finished

M6.3/3/2

Data analysis of results of survey is finished

M6.3/3/3

Analysis of literature on duty to re-contact is finished

Patient Education

Deliverables

D6.1/3/1

Check 1st draft of leaflets for accuracy and readability (with patients and professionals)

D6.1/3/2

Translate 1st batch of leaflets

D6.1/3/3

Send leaflets to health professionals in those selected countries to check accuracy of translation and also to add ‘country specific’ information

D6.1/3/4

Test leaflets with a small number of patients in those countries

D6.1/3/5

Begin dissemination on a larger scale

Milestones

M6.1/3/2

1st batch of leaflets tested out with patients in those countries

M6.1/3/3

1st batch of leaflets ready for wider dissemination

M6.1/3/1

Leaflets ready for translation

Patient Rights

Deliverables

M6.4/3/1

Update of data collected on the rights of patients/users of genetic services in Estonia (Month 25), Cyprus and Greece (Month 29), Hungary (Month 31), Lithuania (Month 33), Portugal (Month 35), Slovakia (Month 37), Slovenia (Month 39), Spain (Month 42)

D6.4/3/1

Report on the rights of patients/users of genetic services in Denmark  (Month 25), Estonia (Month 27), Cyprus and Greece (Month 30), Hungary (Month 32), Lithuania (Month 34), Portugal (Month 36), Slovakia (Month 38), Slovenia (Month 40), Spain (Month 43)

D6.4/3/4

A publication on the status of legislation in the field of rights of patients/users of genetic services in Bulgaria and Romania

D6.4/3/2

A publication on the status of legislation in the field of rights of patients/users of genetic services in the Member States which have signed but not yet ratified the Convention

D6.4/3/3

A publication on the status of legislation in the field of rights of patients/users of genetic services in the Member States which have not yet signed the Convention

Milestones

M6.4/3/2

Analysis of the status of legislation in the field of rights of patient/users of genetic services in the Member States which have not yet signed the Convention

M6.4/3/3

Analysis of the status of legislation in the field of rights of patients/users of genetic services in Bulgaria and Romania

Professional Education

Deliverables

D6.2/3/2

Publication of the Core Competences in a peer-reviewed journal

D6.2/3/5

A set of ‘model’ courses identified for use in countries in Europe that can be adapted by local groups and consult widely on the content of these model courses

D6.2/3/3

A set of guidelines on the knowledge and skills needed by health professionals and collate existing resources that could be used to attain that knowledge and skills

D6.2/3/4

Report on the feasibility of setting up a European network for genetic nurse/counsellors for support and assessment of competence, based on research

D6.2/3/1

A robust framework of core competences for health professionals that has been subjected to wide consultation across a range of stakeholders. The final document will be available to the public via the EUGT website and on application to the project team

D6.2/2/3

Publication on the evaluation of genetic information from the internet

Milestones

M6.2/2/2

forum on the website

M6.2/3/1

ESHG Public and Professional Policy Committee (PPPC) key standards for genetic services document compared with core competences for consistency

M6.2/3/2

Gaps in the existing resources identified and suggestion of courses to fill those needs

M6.2/3/3

Consultation with representatives of national societies re core competence framework