Ethical, social, and cultural issues related to clinical genetic testing and counseling in low- and middle-income countries: a systematic review

Adrina Zhong; Benedict Darren; Bethina Loiseau; Li Qun Betty He; Trillium Chang; Jessica Hill; Helen Dimaras

doi:10.1038/s41436-018-0090-9

Ethical, social, and cultural issues related to clinical genetic testing and counseling in low- and middle-income countries: a systematic review

Genet Med. 2021 Dec;23(12):2270-2280. doi: 10.1038/s41436-018-0090-9. Epub 2018 Aug 3.

Authors

Adrina Zhong^{1

2}, Benedict Darren^{3

4}, Bethina Loiseau³, Li Qun Betty He^{3

5}, Trillium Chang³, Jessica Hill⁶, Helen Dimaras^{7

8

9

10

11}

Affiliations

¹ Division of Social and Behavioural Health Sciences, Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada.
² Schulich School of Medicine & Dentistry, Western University, Canada.
³ Human Biology Program, Faculty of Arts & Science, University of Toronto, Toronto, ON, Canada.
⁴ Department of Psychiatry, Faculty of Medicine, University of British Columbia, Vancouver, British Columbia, Canada.
⁵ Michael G. DeGroote Medical School, McMaster University, Hamilton, ON, Canada.
⁶ Department of Molecular Genetics, Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
⁷ Division of Clinical Public Health, Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada. helen.dimaras@utoronto.ca.
⁸ Department of Ophthalmology & Vision Sciences, Faculty of Medicine, University of Toronto, Toronto, ON, Canada. helen.dimaras@utoronto.ca.
⁹ Department of Ophthalmology & Vision Sciences, The Hospital for Sick Children, Toronto, ON, Canada. helen.dimaras@utoronto.ca.
¹⁰ Child Health Evaluative Sciences Program & The Centre for Global Child Health, SickKids Research Institute, Toronto, ON, Canada. helen.dimaras@utoronto.ca.
¹¹ Department of Human Pathology, College of Health Sciences, University of Nairobi, Nairobi, Kenya. helen.dimaras@utoronto.ca.

PMID: 30072741
DOI: 10.1038/s41436-018-0090-9

Abstract

Purpose: We performed a systematic review of the ethical, social, and cultural issues associated with delivery of genetic services in low- and middle-income countries (LMICs).

Methods: We searched 11 databases for studies addressing ethical, social, and/or cultural issues associated with clinical genetic testing and/or counselling performed in LMICs. Narrative synthesis was employed to analyze findings, and resultant themes were mapped onto the social ecological model (PROSPERO #CRD42016042894).

Results: After reviewing 13,308 articles, 192 met inclusion criteria. Nine themes emerged: (1) genetic counseling has a tendency of being directive, (2) genetic services have psychosocial consequences that require improved support, (3) medical genetics training is inadequate, (4) genetic services are difficult to access, (5) social determinants affect uptake and understanding of genetic services, (6) social stigma is often associated with genetic disease, (7) family values are at risk of disruption by genetic services, (8) religious principles pose barriers to acceptability and utilization of genetic services, and (9) cultural beliefs and practices influence uptake of information and understanding of genetic disease.

Conclusion: We identified a number of complex and interrelated ethical, cultural, and social issues with implications implications for further development of genetic services in LMICs.

Keywords: Genetic counseling; Genetic testing; Genetics; Global health; Low- and middle-income countries.

Publication types

Research Support, Non-U.S. Gov't
Systematic Review

MeSH terms

Counseling*
Developing Countries*
Genetic Testing
Humans
Poverty

Grants and funding

CIHR/Canada