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Literature DB >> 34870514

Stakeholder Perspectives on Returning Nonactionable Apolipoprotein L1 (APOL1) Genetic Results to African American Research Participants.

Kathleen M West¹, Kerri L Cavanaugh², Erika Blacksher^1,3, Stephanie M Fullerton¹, Ebele M Umeukeje², Bessie Young^1,4, Wylie Burke¹.

Abstract

The ethics of returning nonactionable genetic research results to individuals are unclear. Apolipoprotein L1 (APOL1) genetic variants are nonactionable, predominantly found in people of West African ancestry, and contribute to kidney disease disparities. To inform ethical research practice, we interviewed researchers, clinicians, and African American community members (n = 76) about the potential risks and benefits of returning APOL1 research results. Stakeholders strongly supported returning APOL1 results. Benefits include reciprocity for participants, community education and rebuilding trust in research, and expectation of future actionability. Risks include analytic validity, misunderstanding, psychological burdens, stigma and discrimination, and questionable resource tradeoffs. Conclusions: APOL1 results should be offered to participants. Responsibly fulfilling this offer requires careful identification of best communication practices, broader education about the topic, and ongoing community engagement.

Entities: Chemical

Keywords: apolipoprotein L1; chronic kidney disease; end-stage kidney disease; genetic research; return of results; risks/benefits; stakeholder views

Mesh：

Substances：

Year: 2021 PMID： 34870514 PMCID： PMC9053332 DOI： 10.1177/15562646211063267

Source DB: PubMed Journal: J Empir Res Hum Res Ethics ISSN： 1556-2646 Impact factor: 1.978

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References

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Stakeholder Perspectives on Returning Nonactionable Apolipoprotein L1 (APOL1) Genetic Results to African American Research Participants.

1. Association of trypanolytic ApoL1 variants with kidney disease in African Americans.

2. Return of results and data to study participants.

3. Personal utility in genomic testing: is there such a thing?

4. More than Tuskegee: understanding mistrust about research participation.

5. Return of genomic results to research participants: the floor, the ceiling, and the choices in between.

Review 6. Social Determinants of Health: Addressing Unmet Needs in Nephrology.

7. Allocation of Resources to Communication of Research Result Summaries.

Review 8. APOL1 kidney risk alleles: population genetics and disease associations.

9. Public expectations for return of results from large-cohort genetic research.

10. Frequency of ClinVar Pathogenic Variants in Chronic Kidney Disease Patients Surveyed for Return of Research Results at a Cleveland Public Hospital.