Evidence map›Paper›PMID 33059675›Full record

ArticleBMC medical ethics2020

Challenges to effective and autonomous genetic testing and counseling for ethno-cultural minorities: a qualitative study.

Nehama Cohen-Kfir, Miriam Ethel Bentwich, Andrew Kent, Nomy Dickman, Mary Tanus, Basem Higazi, Limor Kalfon, Mary Rudolf, Tzipora C Falik-Zaccai

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In one paragraph

Article in BMC medical ethics, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Article
  3. Article
  4. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors.

Nehama Cohen-KfirThe Azrieli Faculty of Medicine, Bar Ilan University, 8 Henrietta Szold St, P.O. Box 1589, Safed, Israel.
Miriam Ethel BentwichThe Azrieli Faculty of Medicine, Bar Ilan University, 8 Henrietta Szold St, P.O. Box 1589, Safed, Israel. miriam.bentwich@biu.ac.il.ORCID 0000-0003-3412-8910
Andrew KentDivision of Hematology and Oncology, University of Colorado Hospital, Aurora, Colorado, USA.
Nomy DickmanThe Azrieli Faculty of Medicine, Bar Ilan University, 8 Henrietta Szold St, P.O. Box 1589, Safed, Israel.
Mary TanusIsraeli Ministry of Health, Akko District, Acre, New York, USA.
Basem HigaziThe Azrieli Faculty of Medicine, Bar Ilan University, 8 Henrietta Szold St, P.O. Box 1589, Safed, Israel.
Limor KalfonThe Institute of Human Genetics, Galilee Medical Center, Nahariya, Israel.
Mary RudolfThe Azrieli Faculty of Medicine, Bar Ilan University, 8 Henrietta Szold St, P.O. Box 1589, Safed, Israel.
Tzipora C Falik-ZaccaiThe Azrieli Faculty of Medicine, Bar Ilan University, 8 Henrietta Szold St, P.O. Box 1589, Safed, Israel.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundThe Arab population in Israel is a minority ethnic group with its own distinct cultural subgroups. Minority populations are known to underutilize genetic tests and counseling services, thereby undermining the effectiveness of these services among such populations. However, the general and culture-specific reasons for this underutilization are not well defined. Moreover, Arab populations and their key cultural-religious subsets (Muslims, Christians, and Druze) do not reside exclusively in Israel, but are rather found as a minority group in many European and North American countries. Therefore, focusing on the Arab population in Israel allows for the examination of attitudes regarding genetic testing and counseling among this globally important ethnic minority population.

methodsWe used a qualitative research method, employing individual interviews with 18 women of childbearing age from three religious subgroups (i.e., Druze, Muslim, and Christian) who reside in the Acre district, along with focus group discussions with healthcare providers (HCPs; 9 nurses and 7 genetic counselors) working in the same geographical district.

resultsA general lack of knowledge regarding the goals and practice of genetic counseling resulting in negative preconceptions of genetic testing was identified amongst all counselees. Counselors' objective of respecting patient autonomy in decision-making, together with counselees' misunderstanding of genetic risk data, caused uncertainty, frustration, and distrust. In addition, certain interesting variations were found between the different religious subgroups regarding their attitudes to genetic counseling.

conclusionsThe study highlights the miscommunications between HCPs, particularly counselors from the majority ethno-cultural group, and counselees from a minority ethno-cultural group. The need for nuanced understanding of the complex perspectives of minority ethno-cultural groups is also emphasized. Such an understanding may enhance the effectiveness of genetic testing and counseling among the Arab minority group while also genuinely empowering the personal autonomy of counselees from this minority group in Israel and other countries.

Indexed as

Genetic CounselingMinority GroupsArabsCounselingFemaleGenetic TestingHumansIsraelNorth AmericaQualitative ResearchArab minoritiesEthno-cultural minorityGenetic counseling barriersMulticultural societyPrenatal genetic testingQualitative research

Identifiers

PMID33059675
PMCPMC7565773

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.