Genomic Medicine Alliance - Public Health Genomics

The Public Health Genomics Working Group has been engaged in national and transnational studies to improve our understanding of the level of healthcare professionals and the public awareness of genetics and the various ethical, legal and societal issues that relate to the implementation of genomics into healthcare. In particular, activities of this Working Group focus on the following fields:

1. Applied Genomics and Public Health,

2. Ethics in Genomics

1. Applied Genomics and Public Health

Members of this Working Group have performed surveys aiming to highlight both the extend of genetics education of healthcare professionals and genetic awareness and literacy of the general public.

These studies provide the basis for a critical assessment of the views of the general public and healthcare professionals on genomics and genetic testing services in several countries worldwide, while these surveys could be readily replicated in other countries with the ultimate aim of improving the public understanding of genetics and genetic testing, and facilitating the incorporation of genomic medicine into everyday clinical practice.

Furthermore, a detailed stakeholder analysis was undertaken aiming to the comprehension of attitudes and the mapping of the genomic medicine policy environment. The foundings contributed to the selection and implementation of policy measures by adopting the genomics into conventional medical interventions.

Similar studies are currently being replicated in Southeastern Asian and the Middle Eastern countries, under the umbrella of Genomic Medicine Alliance and are partly supported by the Golden Helix Foundation confirming initial findings and highlighting the need to harmonize genomics education aiming to the raise of genomics awareness to the general public.

Lastly, members of this Working Party have proposed an approach for expediting the integration of Genomic Medicine in resource-limited environments, based on the “Fast-Second winner” strategy.

References:

Pisanu C, et al. (2014). Assessment of the Pharmacogenomics Educational Environment in Southeast Europe. Public Health Genomics 17(5-6): 272-279.

Mitropoulou C, et al. (2014). Documentation and analysis of the policy environment and key stakeholders in pharmacogenomics and genomic medicine in Greece. Public Health Genomics 17(5-6): 280-286.

Mitropoulos K, et al. (2015). Success stories in genomic medicine from resource-limited countries. Hum Genomics 9: 11.

Mitropoulos K, et al. (2017). Genomic Medicine Without Borders: Which Strategies Should Developing Countries Employ to Invest in Precision Medicine? A New "Fast-Second Winner" Strategy. OMICS 21(11): 647-657.

Balasopoulou A, et al. (2017). Advancing Global Precision Medicine: An Overview of Genomic Testing and Counseling Services in Malaysia. OMICS 21(12): 733-740.

2. Ethics in Genomics

The recent advances in the genomic technology and deciphering of the human genome sequence have opened new paths in modern medicine but also posed ethical challenges and dilemmas.

Several ethical issues confront those who are committed to the practice of Genomic Medicine, including the regulation of genetic testing, the governance of genetic research and genomic data sharing in an ethical and publicly accountable way.

This Working Group explores the landscape of direct-to-consumer, beyond the clinic and over-the-counter genetic tests in various countries worldwide, taking always into serious consideration the interethnic and cultural differences.

At the moment, regulation of safeguarding the general public by ensuring them that they become better informed from this type of testing, cost coverage and reimbursement of genetic tests, are lacking in many European countries as well as at a central level.

This Working Group also works closely with the National Genetic Societies and National Ethics Committees to establish guidelines covering ethical, legal and social issues to genetic testing.