Public Education & Awareness
The education and awareness issues in genomic medicine include public understanding and trust, privacy, data sharing and discrimination. There is some overlap between the public education and awareness theme and the Ethical, Legal and Social Implications (ELSI) theme and the workforce skilling theme.
There are a number of websites that provide lists of online educational resources that are appropriate for patients and the public. The World Health Organisation has a genomic resource centre with a specific page for online resources for patients and public. The National Human Genome Research Institute (NHGRI-NIH) has a page that lists primarily US resources and the Garvin Institute of Medical Research in Australia has a page that provides links to videos, blogs, leaflets and factsheets from a range of providers.
Within the Catalogue of Global Genomic Medicine Implementation Initiatives, around half of the initiatives (29/61)* gave some acknowledgement to public or community education and awareness. The following is a summary of the topics.
Gaining and maintaining public trust
A key issue that arises is how to educate the public and build or maintain public trust and confidence in genomic medicine. This issue is often linked to ensuring the public has trust in the health system to keep their medical data, including results of genomic testing, safe and ensure they can’t be discriminated against. Another issue relates to organisational reputation and being able to establish recognition as a trusted source of information on genomic medicine.
Increasing awareness and ensuring understanding of genomic testing
A more specific aim of public education and awareness activities involves increasing public understanding of genetic and genomics. This often involves improving support for individuals and families to make informed choices about genomic testing and providing consent. This includes the need to describe the complexity that can arise from genomic testing results compared to results patients may have previously received. It is recognised that these education activities must highlight not only the benefits but also the risks associated with testing such as discovering incidental findings. Education on the subsequent choices and avenues that may or may not be available to the community is also important. In this area many different approaches are being used for educational and teaching programs including the use of telehealth services, mobile health apps, counselling services, videos, leaflets, participation in research and social media channels.
Understanding consumer perspectives and experience
Attention is being given to understanding the community’s views on the use of genomic information. This includes working with the general public as well as patients, families and patient advocacy groups, which may have differing points of view and require different information and support.
It is also important that education and awareness approaches are tailored to the needs and preferences of different groups within communities and many initiatives are working to ensure that materials are linguistically and culturally appropriate.
Public engagement with research
Many initiatives are also interested in progressing knowledge about genetic variation and its impact on health and so have specific goals of increasing community education and awareness about research and encouraging the community to allow their genetic information to be aggregated and used for research purposes.
Genomic Data Sharing for Research
In addition to work within the initiatives in the catalogue there are also other entities that are interested in promoting the sharing of health and genomic data in support of research. Links to a number of these activities are provided below.
Reputable Health Information
The amount of information available on genetics and genomics is growing rapidly and consumers are becoming more involved in their healthcare. Therefore, it is important to be able to locate and identify reliable health information. Links have been provided to a number of resources where reputable information is available.
Resources on public education and awareness:
Test your cancer - See the real picture. 2019. Bayer Education Resource. US audiences only
Sabatello M, Chen Y, Sanderson SC, Chung WK, Appelbaum PS. Increasing genomic literacy among adolescents. Genetics in Medicine. 2019;21(4):994-1000.
Etchegary H, Green J, Parfrey P, Street C, Pullman D. Community engagement with genetics: public perceptions and expectations about genetics research. Health Expectations. 2015;18(5):1413-25.
Sanderson SC, Suckiel SA, Zweig M, Bottinger EP, Jabs EW, Richardson LD. Development and preliminary evaluation of an online educational video about whole-genome sequencing for research participants, patients, and the general public. Genetics In Medicine. 2015;18:501.
Dressler LG, Jones SS, Markey JM, Byerly KW, Roberts MC. Genomics education for the public: perspectives of genomic researchers and ELSI advisors. Genetic testing and molecular biomarkers. 2014;18(3):131-40.
Hurle B, Citrin T, Jenkins JF, Kaphingst KA, Lamb N, Roseman JE, et al. What does it mean to be genomically literate?: National Human Genome Research Institute Meeting Report. Genet Med. 2013;15(8):658-63.
* Initiatives from the catalogue that acknowledge public education themes
Africa (1) - Human Heredity and Health in Africa (H3Africa) Initiative
Australia (8) - National Health Genomics Policy Framework, NSW Health Genomics Strategy, Genetic and genomic healthcare for Victoria 2021, Australian Genomics, Melbourne Genomics Health Alliance, Queensland Genomics Health Alliance, South Australian Genomics Health Alliance,Australian Genomics Health Futures Mission
Brazil (1) -Human Genome and Stem-Cell Research Center (HUG-CEL)
Canada (2) – Genome Canada Strategic Plan 2012-2017, Genome Canada
Denmark (1) -National Strategy for Personalised Medicine 2017-2020
Estonia (1) -Estonian Genome Center of the University of Tartu (EGCUT) Development Plan for 2015-2021
Europe (2) -Shaping Europe’s Vision for Personalised Medicine - Strategic Research and Innovation Agenda (SRIA), Ubiquitous Pharmacogenomics (U-PGx)
Finland (1) - Improving Health through the use of Genomic Data
France (1) - French Plan for Genomic Medicine 2025
Global (1) -The International Cancer Genome Consortium for Medicine (ICGCmed) Whitepaper
India (1) -National Biotechnology Development Strategy
Italy (1) - National Plan for Public Health Genomics
Mexico (1) - Promotional Consortium of the National Institute of Genomic Medicine (INMEGEN)
Middle East (1) - Centre for Arab Genomic Studies
Spain (1) - CIBERER (Center for Network Research on Rare Diseases)
United Kingdom (3) - Building on our inheritance - Genomic technology in healthcare, The 100,000 Genomes Project Protocol, Generation Genome- Annual Report of the Chief Medical Officer 2016
USA (2) -The 2011 NHGRI strategic plan - Charting a course for genomic medicine from base pairs to bedside, All of Us (Precision Medicine Initiative)