Experiences of perinatal genetic screening for people from migrant and refugee backgrounds: a scoping review
People from refugee and migrant backgrounds often face poor experiences and outcomes in healthcare, and genetic healthcare is no exception. Understanding whether and how these health inequities manifest is an important step towards equitable perinatal genetic screening for genetic or chromosomal con...
Saved in:
| Published in: | European journal of human genetics : EJHG Vol. 33; no. 6; p. 701 |
|---|---|
| Main Authors: | , , , , , |
| Format: | Journal Article |
| Language: | English |
| Published: |
England
01.06.2025
|
| Subjects: | |
| ISSN: | 1476-5438, 1476-5438 |
| Online Access: | Get more information |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| Abstract | People from refugee and migrant backgrounds often face poor experiences and outcomes in healthcare, and genetic healthcare is no exception. Understanding whether and how these health inequities manifest is an important step towards equitable perinatal genetic screening for genetic or chromosomal conditions (offered preconception, prenatally, or during the newborn period). A scoping review was conducted to review international evidence of perceptions and experiences of perinatal genetic screening for people from migrant and refugee backgrounds. Search strategies were applied to Medline, Embase, and CINAHL databases to identify articles meeting eligibility criteria. Evidence was synthesised using descriptive and content analysis, with theoretical frameworks of proportionate universality and relational autonomy used to interpret findings. Of 11,046 unique articles identified, twenty-six met inclusion criteria and underwent full-text review. Most studies were set in Western countries, and participants were primarily born in Asia, South America, or Africa. Studies indicated varying awareness, knowledge, attitudes, and uptake of screening. Several studies highlighted a lack of adequate in-language resources, the use of concepts that were unrecognised in particular communities, and poor interactions with healthcare providers. Strategies to address the above issues included person-centred counselling, increased consultation time, access to interpreters, and training for relevant providers. Other recommendations included addressing structural, financial, and geographical barriers to improve access to screening and associated care. Whilst additional research is required, we propose evidence and theory-informed strategies to improve perinatal genetic screening services for people from migrant and refugee backgrounds. |
|---|---|
| AbstractList | People from refugee and migrant backgrounds often face poor experiences and outcomes in healthcare, and genetic healthcare is no exception. Understanding whether and how these health inequities manifest is an important step towards equitable perinatal genetic screening for genetic or chromosomal conditions (offered preconception, prenatally, or during the newborn period). A scoping review was conducted to review international evidence of perceptions and experiences of perinatal genetic screening for people from migrant and refugee backgrounds. Search strategies were applied to Medline, Embase, and CINAHL databases to identify articles meeting eligibility criteria. Evidence was synthesised using descriptive and content analysis, with theoretical frameworks of proportionate universality and relational autonomy used to interpret findings. Of 11,046 unique articles identified, twenty-six met inclusion criteria and underwent full-text review. Most studies were set in Western countries, and participants were primarily born in Asia, South America, or Africa. Studies indicated varying awareness, knowledge, attitudes, and uptake of screening. Several studies highlighted a lack of adequate in-language resources, the use of concepts that were unrecognised in particular communities, and poor interactions with healthcare providers. Strategies to address the above issues included person-centred counselling, increased consultation time, access to interpreters, and training for relevant providers. Other recommendations included addressing structural, financial, and geographical barriers to improve access to screening and associated care. Whilst additional research is required, we propose evidence and theory-informed strategies to improve perinatal genetic screening services for people from migrant and refugee backgrounds. People from refugee and migrant backgrounds often face poor experiences and outcomes in healthcare, and genetic healthcare is no exception. Understanding whether and how these health inequities manifest is an important step towards equitable perinatal genetic screening for genetic or chromosomal conditions (offered preconception, prenatally, or during the newborn period). A scoping review was conducted to review international evidence of perceptions and experiences of perinatal genetic screening for people from migrant and refugee backgrounds. Search strategies were applied to Medline, Embase, and CINAHL databases to identify articles meeting eligibility criteria. Evidence was synthesised using descriptive and content analysis, with theoretical frameworks of proportionate universality and relational autonomy used to interpret findings. Of 11,046 unique articles identified, twenty-six met inclusion criteria and underwent full-text review. Most studies were set in Western countries, and participants were primarily born in Asia, South America, or Africa. Studies indicated varying awareness, knowledge, attitudes, and uptake of screening. Several studies highlighted a lack of adequate in-language resources, the use of concepts that were unrecognised in particular communities, and poor interactions with healthcare providers. Strategies to address the above issues included person-centred counselling, increased consultation time, access to interpreters, and training for relevant providers. Other recommendations included addressing structural, financial, and geographical barriers to improve access to screening and associated care. Whilst additional research is required, we propose evidence and theory-informed strategies to improve perinatal genetic screening services for people from migrant and refugee backgrounds.People from refugee and migrant backgrounds often face poor experiences and outcomes in healthcare, and genetic healthcare is no exception. Understanding whether and how these health inequities manifest is an important step towards equitable perinatal genetic screening for genetic or chromosomal conditions (offered preconception, prenatally, or during the newborn period). A scoping review was conducted to review international evidence of perceptions and experiences of perinatal genetic screening for people from migrant and refugee backgrounds. Search strategies were applied to Medline, Embase, and CINAHL databases to identify articles meeting eligibility criteria. Evidence was synthesised using descriptive and content analysis, with theoretical frameworks of proportionate universality and relational autonomy used to interpret findings. Of 11,046 unique articles identified, twenty-six met inclusion criteria and underwent full-text review. Most studies were set in Western countries, and participants were primarily born in Asia, South America, or Africa. Studies indicated varying awareness, knowledge, attitudes, and uptake of screening. Several studies highlighted a lack of adequate in-language resources, the use of concepts that were unrecognised in particular communities, and poor interactions with healthcare providers. Strategies to address the above issues included person-centred counselling, increased consultation time, access to interpreters, and training for relevant providers. Other recommendations included addressing structural, financial, and geographical barriers to improve access to screening and associated care. Whilst additional research is required, we propose evidence and theory-informed strategies to improve perinatal genetic screening services for people from migrant and refugee backgrounds. |
| Author | Archibald, Alison D Biggs, Laura J Lewis, Sharon Dawson-McClaren, Belinda Kanga-Parabia, Anaita Tutty, Erin |
| Author_xml | – sequence: 1 givenname: Anaita orcidid: 0000-0003-4656-9246 surname: Kanga-Parabia fullname: Kanga-Parabia, Anaita organization: University of Melbourne, Melbourne, VIC, Australia – sequence: 2 givenname: Alison D orcidid: 0000-0002-4496-8262 surname: Archibald fullname: Archibald, Alison D organization: Victorian Clinical Genetics Services, Melbourne, VIC, Australia – sequence: 3 givenname: Laura J orcidid: 0000-0002-8500-1584 surname: Biggs fullname: Biggs, Laura J organization: Murdoch Children's Research Institute, Melbourne, VIC, Australia – sequence: 4 givenname: Sharon surname: Lewis fullname: Lewis, Sharon organization: University of Melbourne, Melbourne, VIC, Australia – sequence: 5 givenname: Erin surname: Tutty fullname: Tutty, Erin organization: University of Melbourne, Melbourne, VIC, Australia – sequence: 6 givenname: Belinda orcidid: 0000-0002-1372-8258 surname: Dawson-McClaren fullname: Dawson-McClaren, Belinda email: belinda.mcclaren@unimelb.edu.au, belinda.mcclaren@unimelb.edu.au organization: University of Melbourne, Melbourne, VIC, Australia. belinda.mcclaren@unimelb.edu.au |
| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/39755878$$D View this record in MEDLINE/PubMed |
| BookMark | eNpNkElPwzAQhS1URBf4AxyQj1wCdmJn4YaqskiVuMA58jKODIkd7ATaf08qisRp5r153zvMEs2cd4DQJSU3lGTlbWSUZTQhKUsILViZ7E_QgrIiTzjLytm_fY6WMb4TMhkFPUPzrCo4L4tygdrNrodgwSmI2Bt8EE4MosUNOBiswlEFAGddg40P0933LWATfIc72wThBiycxgHM2ABgKdRHE_zodLzDYoJ9f0ADfFn4PkenRrQRLo5zhd4eNq_rp2T78vi8vt8mihV8SAzjoEkutZQGSikoIQxSyXMhKkUJ5xXTeW6MFBlluiJKGGog5VluCEij0xW6_u3tg_8cIQ51Z6OCthUO_BjrjHLKS0Z4MUWvjtFRdqDrPthOhH3996H0B0y3bYo |
| CitedBy_id | crossref_primary_10_1038_s41431_025_01857_2 |
| ContentType | Journal Article |
| Copyright | 2025. The Author(s). |
| Copyright_xml | – notice: 2025. The Author(s). |
| DBID | CGR CUY CVF ECM EIF NPM 7X8 |
| DOI | 10.1038/s41431-024-01748-y |
| DatabaseName | Medline MEDLINE MEDLINE (Ovid) MEDLINE MEDLINE PubMed MEDLINE - Academic |
| DatabaseTitle | MEDLINE Medline Complete MEDLINE with Full Text PubMed MEDLINE (Ovid) MEDLINE - Academic |
| DatabaseTitleList | MEDLINE MEDLINE - Academic |
| Database_xml | – sequence: 1 dbid: NPM name: PubMed url: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed sourceTypes: Index Database – sequence: 2 dbid: 7X8 name: MEDLINE - Academic url: https://search.proquest.com/medline sourceTypes: Aggregation Database |
| DeliveryMethod | no_fulltext_linktorsrc |
| Discipline | Medicine Biology |
| EISSN | 1476-5438 |
| ExternalDocumentID | 39755878 |
| Genre | Journal Article Scoping Review |
| GroupedDBID | --- -Q- 0R~ 29G 2WC 36B 39C 4.4 406 53G 5GY 70F 7X7 88E 8AO 8FE 8FH 8FI 8FJ 8R4 8R5 AACDK AANZL AASML AATNV AAYZH ABAKF ABAWZ ABBRH ABDBE ABDBF ABFSG ABJNI ABLJU ABRTQ ABUWG ABZZP ACAOD ACGFO ACGFS ACKTT ACPRK ACRQY ACSTC ACUHS ACZOJ ADBBV ADFRT AEFQL AEJRE AEMSY AENEX AESKC AEVLU AEXYK AEZWR AFBBN AFDZB AFHIU AFKRA AFSHS AGAYW AGHAI AGQEE AHMBA AHSBF AHWEU AIGIU AILAN AIXLP AJRNO ALFFA ALIPV ALMA_UNASSIGNED_HOLDINGS AMYLF AOIJS ASPBG ATHPR AVWKF AXYYD AYFIA AZFZN B0M BAWUL BBNVY BENPR BHPHI BKKNO BPHCQ BVXVI CAG CCPQU CGR COF CS3 CUY CVF DIK DNIVK DPUIP DU5 E3Z EAD EAP EAS EBC EBD EBLON EBS ECM EE. EHN EIF EIOEI EJD EMB EMK EMOBN EPL EPT ESX F5P FDQFY FEDTE FERAY FIGPU FIZPM FSGXE FYUFA GX1 HCIFZ HMCUK HVGLF HYE HZ~ IWAJR JSO JZLTJ KQ8 LK8 M1P M7P NPM NQJWS O9- OK1 P2P PHGZM PHGZT PJZUB PPXIY PQGLB PQQKQ PROAC PSQYO Q2X Q~Q RIG RNS RNT RNTTT ROL RPM SNX SNYQT SOHCF SOJ SRMVM SV3 SWTZT TAOOD TBHMF TDRGL TR2 TUS UKHRP Y6R ~8M 7X8 |
| ID | FETCH-LOGICAL-c475t-f45ed06bdbbfe8ba1004e2b56aa9c105594d66ffba314d90caf1fe2536f0ebfd2 |
| IEDL.DBID | 7X8 |
| ISICitedReferencesCount | 2 |
| ISICitedReferencesURI | http://www.webofscience.com/api/gateway?GWVersion=2&SrcApp=Summon&SrcAuth=ProQuest&DestLinkType=CitingArticles&DestApp=WOS_CPL&KeyUT=001389282900001&url=https%3A%2F%2Fcvtisr.summon.serialssolutions.com%2F%23%21%2Fsearch%3Fho%3Df%26include.ft.matches%3Dt%26l%3Dnull%26q%3D |
| ISSN | 1476-5438 |
| IngestDate | Fri Sep 05 14:05:35 EDT 2025 Mon Jul 21 06:03:32 EDT 2025 |
| IsDoiOpenAccess | false |
| IsOpenAccess | true |
| IsPeerReviewed | true |
| IsScholarly | true |
| Issue | 6 |
| Language | English |
| License | 2025. The Author(s). |
| LinkModel | DirectLink |
| MergedId | FETCHMERGED-LOGICAL-c475t-f45ed06bdbbfe8ba1004e2b56aa9c105594d66ffba314d90caf1fe2536f0ebfd2 |
| Notes | ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 ObjectType-Review-3 content type line 23 |
| ORCID | 0000-0002-1372-8258 0000-0003-4656-9246 0000-0002-8500-1584 0000-0002-4496-8262 |
| OpenAccessLink | https://link.springer.com/article/10.1038/s41431-024-01748-y |
| PMID | 39755878 |
| PQID | 3151584057 |
| PQPubID | 23479 |
| ParticipantIDs | proquest_miscellaneous_3151584057 pubmed_primary_39755878 |
| PublicationCentury | 2000 |
| PublicationDate | 2025-06-01 |
| PublicationDateYYYYMMDD | 2025-06-01 |
| PublicationDate_xml | – month: 06 year: 2025 text: 2025-06-01 day: 01 |
| PublicationDecade | 2020 |
| PublicationPlace | England |
| PublicationPlace_xml | – name: England |
| PublicationTitle | European journal of human genetics : EJHG |
| PublicationTitleAlternate | Eur J Hum Genet |
| PublicationYear | 2025 |
| SSID | ssj0014771 |
| Score | 2.464399 |
| SecondaryResourceType | review_article |
| Snippet | People from refugee and migrant backgrounds often face poor experiences and outcomes in healthcare, and genetic healthcare is no exception. Understanding... People from refugee and migrant backgrounds often face poor experiences and outcomes in healthcare, and genetic healthcare is no exception. Understanding... |
| SourceID | proquest pubmed |
| SourceType | Aggregation Database Index Database |
| StartPage | 701 |
| SubjectTerms | Female Genetic Testing - standards Humans Pregnancy Refugees - psychology Transients and Migrants - psychology |
| Title | Experiences of perinatal genetic screening for people from migrant and refugee backgrounds: a scoping review |
| URI | https://www.ncbi.nlm.nih.gov/pubmed/39755878 https://www.proquest.com/docview/3151584057 |
| Volume | 33 |
| WOSCitedRecordID | wos001389282900001&url=https%3A%2F%2Fcvtisr.summon.serialssolutions.com%2F%23%21%2Fsearch%3Fho%3Df%26include.ft.matches%3Dt%26l%3Dnull%26q%3D |
| hasFullText | |
| inHoldings | 1 |
| isFullTextHit | |
| isPrint | |
| link | http://cvtisr.summon.serialssolutions.com/2.0.0/link/0/eLvHCXMwpV1JS8NAFB7c8eK-1I0RvAbTzBovIqJ4aelBobcwq4iaqKlC_73vJZGeBMFLIIeBMHnL99aPkDMp0ygZaJrTuUu4EXmSc6FA47XTEMmJLLqGbEINh3o8zkddwq3u2ip_bGJjqH3lMEd-ztDzaoQXl2_vCbJGYXW1o9CYJ4sMoAxKtRrPqghctQEXVzIRnOluaCZl-rzmABQgkM6wB0NxnUx_h5iNq7ld_-9HbpC1DmTSq1YqNslcKLfIcks7Od0iK4OuoL5NXmarjmtaRYovJWZ0KAgWzjdSMCsQ6oKDowBvadtwTnEohb4-PYKjm1BTegp-9vMxBGqNe8ZBkdLXF9RQnHnBo-2AzA55uL25v75LOgKGxHElJknkIvhUWm9tDNoa3C4XMiukMblDZs2ceyljtIb1uc9TZ2I_hkwwGdNgo892yUJZlWGf0JRljuVehaAgRorGuiC4MhA8GSW88j1y-nOjBQg4Vi1MGarPupjdaY_stb-leGs3cRQApoTQSh_84fQhWc2Qu7fJoByRxQjqHY7JkvuaPNUfJ43kwHM4GnwDveXPLw |
| linkProvider | ProQuest |
| openUrl | ctx_ver=Z39.88-2004&ctx_enc=info%3Aofi%2Fenc%3AUTF-8&rfr_id=info%3Asid%2Fsummon.serialssolutions.com&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.genre=article&rft.atitle=Experiences+of+perinatal+genetic+screening+for+people+from+migrant+and+refugee+backgrounds%3A+a+scoping+review&rft.jtitle=European+journal+of+human+genetics+%3A+EJHG&rft.au=Kanga-Parabia%2C+Anaita&rft.au=Archibald%2C+Alison+D&rft.au=Biggs%2C+Laura+J&rft.au=Lewis%2C+Sharon&rft.date=2025-06-01&rft.eissn=1476-5438&rft.volume=33&rft.issue=6&rft.spage=701&rft_id=info:doi/10.1038%2Fs41431-024-01748-y&rft_id=info%3Apmid%2F39755878&rft_id=info%3Apmid%2F39755878&rft.externalDocID=39755878 |
| thumbnail_l | http://covers-cdn.summon.serialssolutions.com/index.aspx?isbn=/lc.gif&issn=1476-5438&client=summon |
| thumbnail_m | http://covers-cdn.summon.serialssolutions.com/index.aspx?isbn=/mc.gif&issn=1476-5438&client=summon |
| thumbnail_s | http://covers-cdn.summon.serialssolutions.com/index.aspx?isbn=/sc.gif&issn=1476-5438&client=summon |