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

2021 ◽  
pp. 155626462110632
Author(s):  
Kathleen M. West ◽  
Kerri L. Cavanaugh ◽  
Erika Blacksher ◽  
Stephanie M. Fullerton ◽  
Ebele M. Umeukeje ◽  
...  
Keyword(s):  
African American ◽  
Community Education ◽  
African Ancestry ◽  
Genetic Research ◽  
Community Members ◽  
Research Results ◽  
Stakeholder Perspectives ◽  
Potential Risks ◽  
Apolipoprotein L1 ◽  
Analytic Validity

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.

scholarly journals At the Research-Clinical Interface

2020 ◽  
Vol 15 (8) ◽  
pp. 1181-1189 ◽  
Author(s):  
Kathleen M. West ◽  
Erika Blacksher ◽  
Kerri L. Cavanaugh ◽  
Stephanie M. Fullerton ◽  
Ebele M. Umeukeje ◽  
...  
Keyword(s):  
Genetic Research ◽  
Clinical Implications ◽  
Clinical Validity ◽  
Research Results ◽  
Individual Research Results ◽  
Study Participants ◽  
Participant Perspectives ◽  
Apolipoprotein L1 ◽  
Analytic Validity

Whether individual results of genetic research studies ought to be disclosed to study participants has been debated in recent decades. Previously, the prevailing expert view discouraged the return of individual research results to participants because of the potential lack of analytic validity, questionable clinical validity and medical actionability, and questions about whether it is the role of research to provide participants with their data. With additional knowledge of participant perspectives and shifting views about the benefits of research and respect for participants, current expert consensus is moving toward support of returning such results. Significant ethical controversies remain, and there are many practical questions left to address, including appropriate procedures for returning results and the potential burden to clinicians when patients seek guidance about the clinical implications of research results. In this review, we describe current views regarding the return of genetic research results, including controversies and practical challenges, and consider the application of these issues to research on apolipoprotein L1 (APOL1), a gene recently associated with health disparities in kidney disease. Although this case is unique, it illustrates the complexities involved in returning results and highlights remaining questions.

A Focus Group Study on African American Living Donors’ Treatment Preferences, Sociocultural Factors, and Health Beliefs About Apolipoprotein L1 Genetic Testing

2019 ◽  
Vol 29 (3) ◽  
pp. 239-247
Author(s):  
Elisa J. Gordon ◽  
Daniela Amórtegui ◽  
Isaac Blancas ◽  
Catherine Wicklund ◽  
John Friedewald ◽  
...  
Keyword(s):  
African American ◽  
Ethnic Identity ◽  
Genetic Testing ◽  
Health Beliefs ◽  
African Ancestry ◽  
Treatment Preferences ◽  
Sociocultural Factors ◽  
Focus Group Study ◽  
Risk Variants ◽  
Apolipoprotein L1

Introduction: Because apolipoprotein L1 ( APOL1) risk variants may contribute to live donors’ kidney failure postdonation, professional guidelines suggest informing potential donors with African ancestry about the availability of APOL1 genotyping. This study assessed African American (AA) donors’ perceptions of APOL1 genetic testing and how APOL1 may affect ethnic identity. Methods/Approach: Four focus groups were conducted with AA donors about their decision-making for and perceptions of APOL1 genetic testing and donation to inform a new culturally targeted educational brochure on APOL1 genetic testing. Qualitative data were analyzed by thematic analysis. Findings: Seventeen donors participated (47% participation rate). Four major themes emerged. (1) In hypothetical scenarios, most participants would have undergone APOL1 testing during donor evaluation to make a more informed decision, but many would have still donated. (2) Participants desired information about how having 2 APOL1 risk variants affects the donor’s and the recipient’s health. (3) Participants referred to diversity of genetic ancestry and cultural constructions of racial/ethnic identity to question the population at risk for APOL1 risk variants and recommended that all potential donors undergo genetic testing and receive education about APOL1. (4) Participants worried that out-of-pocket costs would deter APOL1 testing and that APOL1 could become a preexisting condition and discriminate against AAs. Discussion: Our findings suggest that AA donors desire APOL1 testing to foster informed consent. Transplant clinicians should be aware of these responses to APOL1 testing and be sensitive to historical issues of distrust and discrimination.

Ethics of Conducting Virtual Ethnography on Visual Platforms

2018 ◽  
Vol 12 (2) ◽  
pp. 163-178
Author(s):  
Kayla Wheeler
Keyword(s):  
African American ◽  
Online Community ◽  
Gender Segregation ◽  
Religious Groups ◽  
Virtual Ethnography ◽  
History Of ◽  
Standard Set ◽  
Potential Risks ◽  
Visually Based ◽  
Diverse Groups

For scholars, the internet provides a space to study diverse groups of people across the world and can be a useful way to bypass physical gender segregation and travel constraints. Despite the potential for new insights into people’s everyday life and increased attention from scholars, there is no standard set of ethics for conducting virtual ethnography on visually based platforms, like YouTube and Instagram. While publicly accessible social media posts are often understood to be a part of the public domain and thus do not require a researcher to obtain a user’s consent before publishing data, caution must be taken when studying members of a vulnerable community, especially those who have a history of surveillance, like African-American Muslims. Using a womanist approach, the author provides recommendations for studying vulnerable religious groups online, based on a case study of a YouTube channel, Muslimah2Muslimah, operated by two African-American Muslim women. The article provides an important contribution to the field of media studies because the author discusses a “dead” online community, where users no longer comment on the videos and do not maintain their own profiles, making obtaining consent difficult and the potential risks of revealing information to an unknown community hard to gauge.

scholarly journals Solutions for Unexpected Challenges Encountered when Integrating Research Genomics Results into the EHR

ACI Open ◽  
2020 ◽  
Vol 04 (02) ◽  
pp. e132-e135
Author(s):  
Luke V. Rasmussen ◽  
Christin Hoell ◽  
Maureen E. Smith ◽  
Rex Chisholm ◽  
Justin Starren ◽  
...  
Keyword(s):  
Genetic Research ◽  
Lessons Learned ◽  
Return Of Results ◽  
Patient Portal ◽  
Test Results ◽  
Research Results ◽  
Genetic Test Results ◽  
Future Return ◽  
New Research ◽  
Genetic Results

Abstract Background While there have been published reports detailing technical challenges of incorporating genetic test results into the electronic health record (EHR) with proposed solutions, less has been published about unanticipated sociotechnological or practical communication challenges involved in this process. Objectives This study was aimed to describe unanticipated issues that arose returning genetic research results through the EHR as part of the National Human Genome Research Institute (NHGRI)-funded electronic Medical Records and Genomics (eMERGE) 3 consortium, and provide lessons learned for future implementations Methods We sequenced 3,000 participants on a 109-gene panel and returned genetic results initially in person and/or by letter, with a later release directly into the EHR and patient portal. Results When results were returned through the EHR, multiple participants expressed confusion and contacted the health system, resulting in our institution temporarily freezing our return of research results. Discussion We determined the likely causes of this issue to be (1) the delay between enrollment and results return, (2) inability to personalize mass e-mail messages announcing new research test results in the EHR, (3) limited space for description of test results in the EHR, and (4) the requirement to list an ordering physician for research results in the EHR. For future return of results, we propose sending preparatory e-mails to participants, including screenshots of how they can expect to see their results presented in the EHR portal. Conclusion We hope our lessons learned can provide helpful guidance to other sites implementing research genetic results into the EHR and can encourage EHR developers to incorporate greater flexibility in the future.

Beliefs About Causes of Schizophrenia Among Urban African American Community Members

2010 ◽  
Vol 81 (4) ◽  
pp. 349-362 ◽  
Author(s):  
Beth Broussard ◽  
Sandra M. Goulding ◽  
Colin L. Talley ◽  
Michael T. Compton
Keyword(s):  
African American ◽  
African American Community ◽  
Community Members

scholarly journals Nonprofits and the Promotion of Civic Engagement: A Conceptual Framework for Understanding the "Civic Footprint" of Nonprofits within Local Communities

2014 ◽  
Vol 5 (1) ◽  
Author(s):  
Micheal L. Shier ◽  
Lindsey McDougle ◽  
Femida Handy
Keyword(s):  
United States ◽  
Civic Engagement ◽  
Nonprofit Organizations ◽  
Rural Community ◽  
Community Education ◽  
The United States ◽  
Local Communities ◽  
Future Research ◽  
Community Members ◽  
Education And Awareness

ABSTRACT   The literature suggests that nonprofit organizations provide civic benefits by promoting engagement within local communities. However, there exists minimal empirical evidence describing the ways in which nonprofits actually undertake this role. In order to address this omission, we conducted interviews with personnel of nonprofit organizations in one rural community in the United States. Our preliminary findings indicate that nonprofit organizations promote civic engagement through programs and activities that: 1) engage volunteers and donors; 2) bring community members together; 3) collaborate with organizations within and beyond the community; and 4) promote community education and awareness. Together, these findings help to develop a working model to understand the civic footprint of nonprofit organizations with methodological implications for future research that would seek to measure the extent to which nonprofits promote civic engagement. Il est normal de supposer que les associations à but non lucratif favorisent l’engagement du citoyen dans les communautés locales. Cependant, il existe peu de données empiriques sur la manière dont ces associations assument véritablement ce rôle. Pour combler ce manque, nous avons mené des entretiens semi-directifs approfondis auprès du personnel d’associations à but non lucratif dans une petite communauté rurale aux États-Unis. Nos résultats préliminaires indiquent que ces associations motivent les citoyens à s’impliquer quand elles offrent des programmes et des activités qui : 1) intéressent les bénévoles et les donateurs; 2) rassemblent directement ou indirectement les membres de la communauté; 3) collaborent avec d’autres associations tant au sein de la communauté qu’au-delà de celle-ci; et 4) encouragent l’éducation et la conscientisation communautaires. Ces constats aident à établir un modèle pour mieux comprendre la présence civique des associations à but non lucratif dans les communautés et indiquent une piste à suivre pour des recherches futures qui examineraient l’influence de ces associations sur le niveau de participation civique.

scholarly journals Genetic Determinants of Telomere Length in African American Youth

2018 ◽  
Author(s):  
Andrew M. Zeiger ◽  
Marquitta J. White ◽  
Sam S. Oh ◽  
Jonathan Witonsky ◽  
Maria G. Contreras ◽  
...  
Keyword(s):  
African American ◽  
Telomere Length ◽  
Genome Wide Association Study ◽  
African Ancestry ◽  
African American Youth ◽  
Genetic Associations ◽  
Disease States ◽  
Genome Wide ◽  
Pediatric Populations ◽  
Genetic And Environmental Factors

ABSTRACTTelomere length (TL) is associated with numerous disease states and is affected by genetic and environmental factors. However, TL has been mostly studied in adult populations of European or Asian ancestry. These studies have identified 34 TL-associated genetic variants recently used as genetic proxies for TL. The generalizability of these associations to pediatric populations and racially diverse populations, specifically of African ancestry, remains unclear. Furthermore, six novel variants associated with TL in a population of European children have been identified but not validated. We measured TL from whole blood samples of 492 healthy African American youth (children and adolescents between 8 and 20 years old) and performed the first genome-wide association study of TL in this population. We were unable to replicate neither the 34 reported genetic associations found in adults nor the six genetic associations found in European children. However, we discovered a novel genome-wide significant association between TL and rs1483898 on chromosome 14. Our results underscore the importance of examining these genetic associations with TL in diverse pediatric populations such as African Americans.

ABCA7, a Genetic Risk Factor Associated with Alzheimer’s Disease Risk in African Americans

2022 ◽  
pp. 1-15
Author(s):  
Kaitlyn E. Stepler ◽  
Taneisha R. Gillyard ◽  
Calla B. Reed ◽  
Tyra M. Avery ◽  
Jamaine S. Davis ◽  
...  
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
African American ◽  
Amyloid Beta ◽  
Disease Risk ◽  
African Ancestry ◽  
European Ancestry ◽  
Black Adults ◽  
American Black ◽  
The Impact

African American/Black adults are twice as likely to have Alzheimer’s disease (AD) compared to non-Hispanic White adults. Genetics partially contributes to this disparity in AD risk, among other factors, as there are several genetic variants associated with AD that are more prevalent in individuals of African or European ancestry. The phospholipid-transporting ATPase ABCA7 (ABCA7) gene has stronger associations with AD risk in individuals with African ancestry than in individuals with European ancestry. In fact, ABCA7 has been shown to have a stronger effect size than the apolipoprotein E (APOE) ɛ4 allele in African American/Black adults. ABCA7 is a transmembrane protein involved in lipid homeostasis and phagocytosis. ABCA7 dysfunction is associated with increased amyloid-beta production, reduced amyloid-beta clearance, impaired microglial response to inflammation, and endoplasmic reticulum stress. This review explores the impact of ABCA7 mutations that increase AD risk in African American/Black adults on ABCA7 structure and function and their contributions to AD pathogenesis. The combination of biochemical/biophysical and ‘omics-based studies of these variants needed to elucidate their downstream impact and molecular contributions to AD pathogenesis is highlighted.

“An Example for the Rest of the Nation”

2019 ◽  
pp. 217-246
Author(s):  
Martin Summers
Keyword(s):  
African American ◽  
World War Ii ◽  
Federal Government ◽  
Mentally Ill ◽  
Local Community ◽  
Racial Segregation ◽  
Hospital Staff ◽  
World War ◽  
Community Members ◽  
Changing Demographics

This chapter covers the various challenges to Saint Elizabeths’ segregationist culture made by both black Washingtonians and the federal government over the first half of the twentieth century. It begins by exploring the staff’s inability to effect an absolute racial segregation in the wards, which was the result of the hospital’s constantly being in a state of overcapacity. The chapter also looks at the changing demographics of the patient population following World War II, when the army and navy stopped sending its mentally ill service members to Saint Elizabeths. It then turns to an examination of local community members’ and the federal government’s challenges to discrimination against black medical students, mistreatment of African American patients in the 1920s and 1930s, and exclusionary and segregationist employment policies. This chapter covers the desegregation of the hospital staff, from attendants and nurses in the 1930s and 1940s to physicians in the 1950s.

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