African American Nurses' Perspectives on Genomic Medicine Research

Hendricks‐Sturrup, Rachele; Edgar, Lauren; Johnson-Glover, Tracey; Lu, Christine Y.

doi:10.1001/amajethics.2021.240

Cited by 4 publications

(4 citation statements)

References 17 publications

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“…Cultural factors can impact people's attitudes towards biobanking and the sharing of genomic data (Abadie and Heaney, 2015;Anie et al, 2021;Canedo et al, 2020;Haring et al, 2018;Lysaght et al, 2020), as well as access to medical help (Atkins et al, 2020) and affecting health outcomes more generally (Aviles-Santa et al, 2017). Incorporating cultural values in research practices was perceived necessary for improving diversity (Jacobs et al, 2010;Aviles-Santa et al, 2017;Haring et al, 2018;Bentley et al, 2020;Hendricks-Sturrup and Johnson-Glover, 2021;Fatumo et al, 2022). However, some highlighted that using cultural factors for stereotyping and blaming patients for mismanaging disease (Bell et al, 2019) should be avoided.…”

Section: Reflexivitymentioning

confidence: 99%

“…7 (2) Accessibility 8 . Both reviews and workshop discussions emphasised the importance of adapting research practices to the needs of different groups and designing accessible communication strategies that ensure critical information is conveyed clearly and effectively (Kobayashi et al, 2013;Campbell et al, 2017;Kraft and Doerr, 2018;Hendricks-Sturrup and Johnson-Glover, 2021;Uebergang et al, 2021;Garofalo et al, 2022). Such communication strategies were thought to improve the trustworthiness of research (Blanchard et al, 2020).…”

Section: Reflexivitymentioning

confidence: 99%

“…The rapid review reported concerns about the assumptions made regarding nonparticipation in genomic studies. Concerns included those related to privacy (Buseh et al, 2013;Abadie and Heaney, 2015;Simon et al, 2017;Garrison et al, 2019;Lee et al, 2019;Reddy et al, 2020;De Ver Dye et al, 2021;Hendricks-Sturrup and Johnson-Glover, 2021), stigmatisation (Marsh et al, 2013;Abadie and Heaney, 2015;Faure et al, 2019), commodification of data leading to dispossession (Abadie and Heaney, 2015) and re-use of data beyond the scope of the original research 9 (de Vries et al, 2014); for example, by commercialisation of the research and unjust corporate profiteering (Lee et al, 2019). It was noted that whilst such concerns may be common amongst other groups, they might be heightened for those from underserved groups due to experiences of stigmatisation, discrimination and prejudicial judgement (Abadie and Heaney, 2015), 10 particularly in cases of disease-related stigma (Ali- Khan and Daar, 2010;Faure et al, 2019).…”

Section: Reflexivitymentioning

confidence: 99%

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The ethical challenges of diversifying genomic data: A qualitative evidence synthesis

Hardcastle,

Lyle,

Horton

et al. 2023

Camb. prisms Precis. med.

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This article aims to explore the ethical issues arising from attempts to diversify genomic data and include individuals from underserved groups in studies exploring the relationship between genomics and health. We employed a qualitative synthesis design, combining data from three sources: 1) a rapid review of empirical articles published between 2000 and 2022 with a primary or secondary focus on diversifying genomic data, or the inclusion of underserved groups and ethical issues arising from this, 2) an expert workshop and 3) a narrative review. Using these three sources we found that ethical issues are interconnected across structural factors and research practices. Structural issues include failing to engage with the politics of knowledge production, existing inequities, and their effects on how harms and benefits of genomics are distributed. Issues related to research practices include a lack of reflexivity, exploitative dynamics and the failure to prioritise meaningful co-production. Ethical issues arise from both the structure and the practice of research, which can inhibit researcher and participant opportunities to diversify data in an ethical way. Diverse data are not ethical in and of themselves, and without being attentive to the social, historical and political contexts that shape the lives of potential participants, endeavours to diversify genomic data run the risk of worsening existing inequities. Efforts to construct more representative genomic datasets need to develop ethical approaches that are situated within wider attempts to make the enterprise of genomics more equitable.

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Section: Reflexivitymentioning

confidence: 99%

Section: Reflexivitymentioning

confidence: 99%

Section: Reflexivitymentioning

confidence: 99%

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The ethical challenges of diversifying genomic data: A qualitative evidence synthesis

Hardcastle,

Lyle,

Horton

et al. 2023

Camb. prisms Precis. med.

View full text Add to dashboard Cite

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“…These included democratic deliberation; community-based dialogue using focus groups, interviews, workshops and/or discussions with community leaders or local organisations; and the development of relationship models based on issues of pertinence to participants(Anie K.A. et al 2021;Culhane-Pera et al 2017;Hendricks-Sturrup R.M. et al 2021;Hiratsuka V.Y.…”

mentioning

confidence: 99%

Ethical, Legal and Social Issues in Diversifying Genomic Data: Literature Review and Synthesis

Hardcastle¹,

Ballard²,

Weller³

et al. 2022

Preprint

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Advances in technology have resulted in the ability to sequence entire human genomes as a routine, relatively inexpensive, investigation in healthcare. This offers many promises of personalising, stratifying, and targeting healthcare with an understanding of genetic susceptibility to particular diseases or conditions. However, research collections (databases, biobanks etc) that underpin these developments are significantly skewed towards populations of European ancestry meaning that our understanding of genetic susceptibility (or indeed of genetic protection to disease) is less good for many other populations in the world. Just as a dermatology text book skewed towards skin problems on white skin may be less useful to black populations, so genomic knowledge derived from one particular ancestry means it may be less useful to people with different ancestries. The need to diversify genomic data, to improve the evidence base for genomic medicine for all ancestries, is well recognised, but is more complex than simply increasing the collection of data from people from a range of ancestries. We reviewed the literature to understand the challenges of diversifying genomic data to identify key ethical, legal and social issues. Our findings were: 1.Many research practices are exclusionary and need to change. Examples include approaches to recruitment or data collection that do not consider the cultural setting in which potential participants are situated. Research also often lacks reflexivity about diversity on the part of researchers and research institutions. 2.Co-design is key to identifying and avoiding potential problems around data diversification. This requires an understanding of the concerns of underserved individuals and communities regarding exploitation and stigmatisation, as well as issues of data ownership and sovereignty. Without attention to group as well as individual concerns, participant engagement may become tokenistic which in turn risks exacerbating existing, as well as creating new, inequalities. 3.There are wider structural issues that influence researchers’ and participants’ attempts to generate diverse data. For example, (a) some researchers view data as neutral, but this ignores the social construction of data and technologies, and their tendencies to reflect societal inequalities. (b). Efforts to diversify data should be contextualised within the historical trajectory of structural racism and legacies of colonialism. (c) Classification and categorisation of populations have political consequences and need to be closely interrogated. These findings show that deliberation between researchers and participants, during all stages of research from planning and recruitment through to analysis, interpretation and dissemination is key to successful diversification.

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Nursing strategies to address health disparities in genomics-informed care: a scoping review

Limoges,

Chiu,

Dordunoo

et al. 2024

JBI Evidence Synthesis

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Objective: The objective of this review was to map the available global evidence on strategies that nurses can use to facilitate genomics-informed health care to address health disparities to inform the development of a research and action agenda. Introduction: The integration of genomics into health care is improving patient outcomes through better prevention, diagnostics, and treatment; however, scholars have noted concerns with widening health disparities. Nurses work across the health system and can address health disparities from a clinical, research, education, policy, and leadership perspective. To do this, a comprehensive understanding of existing genomics-informed strategies is required. Inclusion criteria: Published (qualitative, quantitative, mixed methods studies, systematic and literature reviews and text and opinion papers) and unpublished (gray) literature that focuses on genomics-informed nursing strategies to address health disparities over the last 10 years were included. No limitations were placed on language. Methods: The review was conducted in accordance with the JBI methodology for scoping reviews. A search was undertaken on May 25, 2023, across 5 databases: MEDLINE (Ovid), Embase, Cochrane Library (Ovid), APA PsycINFO (EBSCOhost), and CINAHL (EBSCOhost). Gray literature was searched through websites, including the International Society of Nurses in Genetics and the Global Genomics Nursing Alliance. Abstracts, titles, and full texts were screened by 2 or more independent reviewers. Data were extracted using a data extraction tool. The coded data were analyzed by 2 or more independent reviewers using conventional content analysis and the summarized results are presented using descriptive statistics and evidence tables. Results: In total, we screened 818 records and 31 were included in the review. The majority of papers were published in either 2019 (n=5, 16%), 2020 (n=5, 16%), or 2021 (n=5, 16%). Most papers came from the United States (n=25, 81%) followed by the Netherlands (n=3, 10%), United Kingdom (n=1, 3%), Tanzania (n=1, 3%) and written from a global perspective (n=1, 3%). Nearly half the papers discussed cancer-related conditions (n=14, 45%) and most of the others did not specify a disease or condition (n=12, 30%). In terms of population, nurse clinicians were mentioned the most frequently (n=16, 52%) followed by nurse researchers, scholars, or scientists (n=8, 26%). The patient population varied, with African American patients or communities (n=7, 23%) and racial or ethnic minorities (n=6, 19%) discussed most frequently. The majority of equity issues focused on inequitable access to genetic and genomics health services amongst ethnic and racial groups (n=14, 45%), individuals with lower educational attainment or health literacy (n=6, 19%), individuals with lower socioeconomic status (n=3, 10%), migrants (n=3, 10%), individuals with lack of insurance coverage (n=2, 6%), individuals living in rural or remote areas (n=1, 3%) individuals of older age (n=1, 3%). Root causes contributing to health disparity issues varied at the patient, provider, and system levels. Strategies were grouped into 2 categories: those to prepare the nursing workforce and those nurses can implement in practice. We further categorized the strategies by domains of practice, including clinical practice, education, research, policy advocacy, and leadership. Papers that mentioned strategies focused on preparing the nursing workforce were largely related to the education domain (n=16, 52%), while papers that mentioned strategies that nurses can implement were mostly related to clinical practice (n=19, 61%). Conclusions: Nurses in all domains of practice can draw on the identified strategies to address health disparities related to genomics in health care. We found a notable lack of intervention and evaluation studies exploring the impact on health and equity outcomes. Additional research informed by implementation science and that measures health outcomes is needed to identify best practices. Supplemental Digital Content: A French-language version of the abstract of this review is available as Supplemental Digital Content [http://links.lww.com/SRX/A65].

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African American Nurses' Perspectives on Genomic Medicine Research

Cited by 4 publications

References 17 publications

The ethical challenges of diversifying genomic data: A qualitative evidence synthesis

The ethical challenges of diversifying genomic data: A qualitative evidence synthesis

Ethical, Legal and Social Issues in Diversifying Genomic Data: Literature Review and Synthesis

Nursing strategies to address health disparities in genomics-informed care: a scoping review

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