“Equity” in genomic health policies: a review of policies in the international arena
IntroductionThe field of genomics is rapidly evolving and has made significant impact on the diagnosis and understanding of rare and genetic diseases, in guiding precision medicine in cancer treatment, and in providing personalized risk assessment for disease development and treatment responses. How...
Saved in:
| Main Authors: | , , , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Frontiers Media S.A.
2024-12-01
|
| Series: | Frontiers in Public Health |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/articles/10.3389/fpubh.2024.1464701/full |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1841550987327700992 |
|---|---|
| author | Prabhathi Basnayake Ralalage Prabhathi Basnayake Ralalage Tala Mitchell Claire Zammit Gareth Baynam Gareth Baynam Emma Kowal Libby Masey Julie McGaughran Tiffany Boughtwood Misty Jenkins Gregory Pratt Angeline Ferdinand |
| author_facet | Prabhathi Basnayake Ralalage Prabhathi Basnayake Ralalage Tala Mitchell Claire Zammit Gareth Baynam Gareth Baynam Emma Kowal Libby Masey Julie McGaughran Tiffany Boughtwood Misty Jenkins Gregory Pratt Angeline Ferdinand |
| author_sort | Prabhathi Basnayake Ralalage |
| collection | DOAJ |
| description | IntroductionThe field of genomics is rapidly evolving and has made significant impact on the diagnosis and understanding of rare and genetic diseases, in guiding precision medicine in cancer treatment, and in providing personalized risk assessment for disease development and treatment responses. However, according to the literature, there is widespread socio economic and racial inequities in the diagnosis, treatment, and in the use of genomic medicine services. This policy review sets out to explore the concept of equity in access to genomic care, the level of inclusion of equity and how it is addressed and what mechanisms are in place to achieve equity in genomic care in the international health policy.MethodsA systematic search for genomic policies was conducted using 3 databases. In addition, General and Specific Policy Repositories, Global Consortia in Genomic Medicine, WHO Collaborating Centers in Genomics, Australian Genomics, Public Policy Projects, Global Genomic Medicine Consortium (G2MC), G2MC conference Oct 2023 and National Human Genome Research Institute databases were searched using the inclusion and exclusion criteria. Seventeen policies were selected and analyzed using the EquiFrame.ResultsThe Core Concept of access is highly cited in most of the selected policies. The CCs that are covered to a lesser degree are participation, quality, coordination of services, cultural responsiveness and non-discrimination. The CCs of liberty and entitlement are not addressed in any of the selected policies. The coverage of vulnerable communities in the policies varies from country to country.DiscussionGenomic health science is rapidly evolving and presents a major challenge for policies to remain current and effectively address new discoveries in the field. There is a relative dearth of policies that focus on clinical genetic services which may reflect a gap in policy and policy research translation and implementation. Recommendations for countries, irrespective of their economic and social contexts, include conducting regular policy reviews to accommodate the advances in genomics field and inclusion of specific mechanisms to achieve equity in genomic health. Insights and experiences in achieving healthcare equity in HICs and LMICs can offer valuable lessons for each other. |
| format | Article |
| id | doaj-art-5641a938a33042aab94f8a587cc89a58 |
| institution | Kabale University |
| issn | 2296-2565 |
| language | English |
| publishDate | 2024-12-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Public Health |
| spelling | doaj-art-5641a938a33042aab94f8a587cc89a582025-01-09T17:01:16ZengFrontiers Media S.A.Frontiers in Public Health2296-25652024-12-011210.3389/fpubh.2024.14647011464701“Equity” in genomic health policies: a review of policies in the international arenaPrabhathi Basnayake Ralalage0Prabhathi Basnayake Ralalage1Tala Mitchell2Claire Zammit3Gareth Baynam4Gareth Baynam5Emma Kowal6Libby Masey7Julie McGaughran8Tiffany Boughtwood9Misty Jenkins10Gregory Pratt11Angeline Ferdinand12Centre for Health Policy, Melbourne School of Population and Global Health, University of Melbourne, Carlton, VIC, AustraliaDepartment of Community Services, Torrens University, Melbourne, VIC, AustraliaCentre for Health Policy, Melbourne School of Population and Global Health, University of Melbourne, Carlton, VIC, AustraliaCentre for Health Policy, Melbourne School of Population and Global Health, University of Melbourne, Carlton, VIC, AustraliaRare Care Centre, Perth Children’s Hospital, Perth, WA, AustraliaWestern Australian Register of Developmental Anomalies and Genetic Health WA, King Edward Memorial Hospital, Subiaco, WA, AustraliaAlfred Deakin Institute, Deakin University, Melbourne, VIC, AustraliaMJD Foundation, Alyangula, NT, AustraliaGenetic Health Queensland, Royal Brisbane and Women’s Hospital, Brisbane, QLD, AustraliaAustralian Genomics Murdoch Children’s Research Institute, Parkville, VIC, AustraliaWalter and Eliza Hall Institute of Medical Research, Parkville, VIC, Australia0Jawun Research Centre, CQUniversity, Brisbane, QLD, AustraliaCentre for Health Policy, Melbourne School of Population and Global Health, University of Melbourne, Carlton, VIC, AustraliaIntroductionThe field of genomics is rapidly evolving and has made significant impact on the diagnosis and understanding of rare and genetic diseases, in guiding precision medicine in cancer treatment, and in providing personalized risk assessment for disease development and treatment responses. However, according to the literature, there is widespread socio economic and racial inequities in the diagnosis, treatment, and in the use of genomic medicine services. This policy review sets out to explore the concept of equity in access to genomic care, the level of inclusion of equity and how it is addressed and what mechanisms are in place to achieve equity in genomic care in the international health policy.MethodsA systematic search for genomic policies was conducted using 3 databases. In addition, General and Specific Policy Repositories, Global Consortia in Genomic Medicine, WHO Collaborating Centers in Genomics, Australian Genomics, Public Policy Projects, Global Genomic Medicine Consortium (G2MC), G2MC conference Oct 2023 and National Human Genome Research Institute databases were searched using the inclusion and exclusion criteria. Seventeen policies were selected and analyzed using the EquiFrame.ResultsThe Core Concept of access is highly cited in most of the selected policies. The CCs that are covered to a lesser degree are participation, quality, coordination of services, cultural responsiveness and non-discrimination. The CCs of liberty and entitlement are not addressed in any of the selected policies. The coverage of vulnerable communities in the policies varies from country to country.DiscussionGenomic health science is rapidly evolving and presents a major challenge for policies to remain current and effectively address new discoveries in the field. There is a relative dearth of policies that focus on clinical genetic services which may reflect a gap in policy and policy research translation and implementation. Recommendations for countries, irrespective of their economic and social contexts, include conducting regular policy reviews to accommodate the advances in genomics field and inclusion of specific mechanisms to achieve equity in genomic health. Insights and experiences in achieving healthcare equity in HICs and LMICs can offer valuable lessons for each other.https://www.frontiersin.org/articles/10.3389/fpubh.2024.1464701/fullpolicygenomicgenetic servicesequitycore conceptvulnerable groups |
| spellingShingle | Prabhathi Basnayake Ralalage Prabhathi Basnayake Ralalage Tala Mitchell Claire Zammit Gareth Baynam Gareth Baynam Emma Kowal Libby Masey Julie McGaughran Tiffany Boughtwood Misty Jenkins Gregory Pratt Angeline Ferdinand “Equity” in genomic health policies: a review of policies in the international arena Frontiers in Public Health policy genomic genetic services equity core concept vulnerable groups |
| title | “Equity” in genomic health policies: a review of policies in the international arena |
| title_full | “Equity” in genomic health policies: a review of policies in the international arena |
| title_fullStr | “Equity” in genomic health policies: a review of policies in the international arena |
| title_full_unstemmed | “Equity” in genomic health policies: a review of policies in the international arena |
| title_short | “Equity” in genomic health policies: a review of policies in the international arena |
| title_sort | equity in genomic health policies a review of policies in the international arena |
| topic | policy genomic genetic services equity core concept vulnerable groups |
| url | https://www.frontiersin.org/articles/10.3389/fpubh.2024.1464701/full |
| work_keys_str_mv | AT prabhathibasnayakeralalage equityingenomichealthpoliciesareviewofpoliciesintheinternationalarena AT prabhathibasnayakeralalage equityingenomichealthpoliciesareviewofpoliciesintheinternationalarena AT talamitchell equityingenomichealthpoliciesareviewofpoliciesintheinternationalarena AT clairezammit equityingenomichealthpoliciesareviewofpoliciesintheinternationalarena AT garethbaynam equityingenomichealthpoliciesareviewofpoliciesintheinternationalarena AT garethbaynam equityingenomichealthpoliciesareviewofpoliciesintheinternationalarena AT emmakowal equityingenomichealthpoliciesareviewofpoliciesintheinternationalarena AT libbymasey equityingenomichealthpoliciesareviewofpoliciesintheinternationalarena AT juliemcgaughran equityingenomichealthpoliciesareviewofpoliciesintheinternationalarena AT tiffanyboughtwood equityingenomichealthpoliciesareviewofpoliciesintheinternationalarena AT mistyjenkins equityingenomichealthpoliciesareviewofpoliciesintheinternationalarena AT gregorypratt equityingenomichealthpoliciesareviewofpoliciesintheinternationalarena AT angelineferdinand equityingenomichealthpoliciesareviewofpoliciesintheinternationalarena |