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Am J Kidney Dis. 2018 Dec;72(6):819-833. doi: 10.1053/j.ajkd.2018.07.017. Epub 2018 Oct 22.

African American Living Donors' Attitudes About APOL1 Genetic Testing: A Mixed Methods Study.

Author information

1
Division of Transplantation, Department of Surgery, Feinberg School of Medicine, Northwestern University, Chicago, IL; Center for Healthcare Studies, Feinberg School of Medicine, Northwestern University, Chicago, IL; Center for Bioethics and Medical Humanities, Feinberg School of Medicine, Northwestern University, Chicago, IL. Electronic address: e-gordon@northwestern.edu.
2
Center for Healthcare Studies, Feinberg School of Medicine, Northwestern University, Chicago, IL.
3
Center for Genetic Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL.
4
Division of Transplantation, Department of Surgery, Feinberg School of Medicine, Northwestern University, Chicago, IL; Division of Internal Medicine, Department of Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL.
5
Biomedical Ethics Program, Mayo Clinic, Rochester, MN.

Abstract

RATIONALE & OBJECTIVE:

African American live kidney donors ("donors") have a greater risk for kidney failure than European American donors. Apolipoprotein L1 gene (APOL1) variants in African Americans may be associated with this disparity.

STUDY DESIGN:

Cross-sectional mixed-methods design.

SETTING & PARTICIPANTS:

African American donors at 1 transplantation center.

ANALYTICAL APPROACH:

Semistructured interviews assessed attitudes about APOL1 genetic testing, willingness to undergo APOL1 testing, hypothetical decisions about donating with 2 APOL1 variants, and demographics. Surveys assessed perceptions of ethnic identity and genetics knowledge. Interview transcriptions were analyzed using thematic analysis. Survey data were analyzed using descriptive statistics.

RESULTS:

23 donors participated in semistructured interviews. Most (96%) reported that transplantation centers should routinely offer APOL1 genetic testing to all African American potential donors. Most (87%) would have been willing to undergo APOL1 testing before donating. Although study participants noted that APOL1 testing may deter African American potential donors from donating, most (61%) would have donated even if they had 2 high-risk APOL1 variants. Several themes emerged. Study participants believed that APOL1 testing was beneficial for providing information to help donors make informed donation decisions. Participants expressed concern about APOL1 variants placing donors at harm for kidney failure, and therefore valued taking preventive health measures. Participants believed that potential donors would experience psychological distress from learning that they have 2 gene variants and could harm their recipients. Participants were apprehensive about insurance coverage and costs of APOL1 testing and feared that APOL1 genetic test results could discriminate against African Americans.

LIMITATIONS:

Findings may not be generalizable to African American potential donors.

CONCLUSIONS:

Findings suggest that African American donors support APOL1 genetic testing yet fear that APOL1 variants and genetic testing could adversely affect donors' health and ethnic identity. Transplantation centers using APOL1 genetic testing should address African American donors' concerns about APOL1 genetic testing to optimize future donors' informed consent practices.

KEYWORDS:

African American; apolipoprotein L1 (APOL1); cultural identity; ethics; ethnicity; genetic testing; health disparities; informed consent; kidney transplantation; living donation; medical decision making; qualitative research; sociocultural

PMID:
30360961
PMCID:
PMC6252162
[Available on 2019-12-01]
DOI:
10.1053/j.ajkd.2018.07.017
[Indexed for MEDLINE]

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