Genetic counselling legislation and practice in cancer in EU Member States

Background: Somatic and germline genetic alterations are significant drivers of cancer. Increasing integration of new technologies which profile these alterations requires timely, equitable and high-quality genetic counselling to facilitate accurate diagnoses and informed decision-making by patients and their families in preventive and clinical settings. This article aims to provide an overview of genetic counselling legislation and practice across European Union (EU) Member States to serve as a foundation for future European recommendations and action. Methods: National legislative databases of all 27 Member States were searched using terms relevant to genetic counselling, translated as appropriate. Interviews with relevant experts from each Member State were conducted to validate legislative search results and provide detailed insights into genetic counselling practice in each country. Results: Genetic counselling is included in national legislative documents of 22 of 27 Member States, with substantial variation in legal mechanisms and prescribed details (i.e. the ‘who, what, when and where’ of counselling). Practice is similarly varied. Workforce capacity (25 of 27 Member States) and genetic literacy (all Member States) were common reported barriers. Recognition and/or better integration of genetic counsellors and updated legislation and were most commonly noted as the ‘most important change’ which would improve practice. Conclusions: This review highlights substantial variability in genetic counselling across EU Member States, as well as common barriers notwithstanding this variation. Future recommendations and action should focus on addressing literacy and capacity challenges through legislative, regulatory and/or strategic approaches at EU, national, regional and/or local levels.</p

Students’ attitudes towards somatic genome editing versus genome editing of the germline using an example of familial leukemia

Although the discussion on possibilities and pitfalls of genome editing is ever present, limited qualitative data on the attitudes of students, who will come into contact with this technology within a social and professional context, is available. The attitude of 97 medical students and 103 students of other subjects from Hannover and Oldenburg, Germany, was analyzed in winter 2017/18. For this purpose, two dilemmas on somatic and germline genome editing concerning familial leukemia were developed. After reading the dilemmas, the students filled out a paper-and-pencil test with five open questions. The qualitative evaluation of the answers was carried by a deductive-inductive procedure of content analysis. There was a high approval for the use of somatic genome editing. When it came to germline genome editing, concerns were raised regarding enhancement, interventions in nature, and loss of uniqueness. The students recognized that somatic genome editing and germline genome editing prove different ethical challenges and need to be judged separately. Many students expressed not feeling fully informed. The results of this project show the importance of educating the public about the possibilities, limitations, and risks of somatic and germline genome editing. We recommend that this should already be addressed in schools in order to optimally prepare students and adults for participation in public discourse. Especially for patients affected by genetic diseases, it is of great importance that the treating physicians and geneticists are sufficiently informed about the method of genome editing to ensure good counseling

Genetic counselling legislation and practice in cancer in EU Member States

Abstract Background: Somatic and germline genetic alterations are significant drivers of cancer. Increasing integration of new technologies which profile these alterations requires timely, equitable and high-quality genetic counselling to facilitate accurate diagnoses and informed decision-making by patients and their families in preventive and clinical settings. This article aims to provide an overview of genetic counselling legislation and practice across European Union (EU) Member States to serve as a foundation for future European recommendations and action. Methods: National legislative databases of all 27 Member States were searched using terms relevant to genetic counselling, translated as appropriate. Interviews with relevant experts from each Member State were conducted to validate legislative search results and provide detailed insights into genetic counselling practice in each country. Results: Genetic counselling is included in national legislative documents of 22 of 27 Member States, with substantial variation in legal mechanisms and prescribed details (i.e. the ‘who, what, when and where’ of counselling). Practice is similarly varied. Workforce capacity (25 of 27 Member States) and genetic literacy (all Member States) were common reported barriers. Recognition and/or better integration of genetic counsellors and updated legislation and were most commonly noted as the ‘most important change’ which would improve practice. Conclusions: This review highlights substantial variability in genetic counselling across EU Member States, as well as common barriers notwithstanding this variation. Future recommendations and action should focus on addressing literacy and capacity challenges through legislative, regulatory and/or strategic approaches at EU, national, regional and/or local level