Towards equitable and trustworthy genomics research

Atutornu, Jerome; Milne, Richard; Costa, Alessia; Patch, Christine; Middleton, Anna

doi:10.1016/j.ebiom.2022.103879

Cited by 35 publications

(27 citation statements)

References 61 publications

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“…Based on the principle of justice, communities should be empowered to negotiate benefit sharing early in the community engagement process ( Moodley and Beyer, 2019 ). Community engagement is key in building equitable research collaborations and its value in GBR is increasingly being appreciated ( Moodley and Singh, 2016 ; Tindana et al, 2017b ; Atutornu et al, 2022 ). Community engagement is vital in seeking the views of the community during the design and implementation of research, and for putting forth the interests of the community ( Jao et al, 2015 ).…”

Section: Discussionmentioning

confidence: 99%

Benefit sharing in genomic and biobanking research in Uganda: Perceptions of researchers and research ethics committee members

et al. 2022

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Background: Genomic and biobanking research has increased in Africa over the past few years. This has raised pertinent ethical, legal, and societal concerns for stakeholders such as sample or data ownership, commercialization, and benefit sharing. There is limited awareness of the concept of benefit sharing by stakeholders in sub-Saharan Africa.Objective: This study aimed to explore the perceptions of researchers and research ethics committee members on benefit sharing in international collaborative genomic and biobanking research.Methods: Qualitative in-depth interviews were conducted with 15 researchers and 19 research ethics committee members. A thematic approach was used to interpret the results.Results: Six themes emerged from the data and these included perceptions on the benefits of genomic and biobanking research; discussion of benefit sharing with participants during the informed consent process; legal implications of benefit sharing and the role of material transfer agreements; equity and fairness in sharing the benefits of genomic research; perceived barriers to fair benefit sharing; and recommendations for fostering fair and equitable benefit sharing in genomic and biobanking research. Most respondents clearly understood the various forms of benefits of genomic and biobanking research and opined that such benefits should be fairly and equitably shared with low and middle-income country researchers and their institutions, and research communities. The perceived barriers to the fair benefit sharing unfavorable include power disparities, weak research regulatory frameworks, and lack of scientific integrity.Conclusion: Overall, respondents believed that the distribution of the advantages of genomic and biobanking research in North-South collaborative research was not equitable nor fair, and that the playing field was not leveled. Therefore, we advocate the following for fair and equitable benefit sharing: Building the capacities and empowering research scientists in developing nations; strengthening regulatory frameworks and extending the purview of the research ethics committee in the development and implementation of material transfer agreements; and meaningfully involving local research communities in benefit sharing negotiations.

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Section: Discussionmentioning

confidence: 99%

Benefit sharing in genomic and biobanking research in Uganda: Perceptions of researchers and research ethics committee members

et al. 2022

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“…Neglecting benefit sharing with the communities in which the research is performed can be considered extractive and exploitative, an approach to research that has been described as ''helicopter'' or ''colonial. [44][45][46][47] These approaches are harmful to both communities and the goals of the broader scientific community because they can exacerbate mistrust of genomics research and decrease its scientific and social value. Maintaining long-term relationships can be especially challenging when researchers are not members of the community or when they reside far away.…”

Section: Assess Projectmentioning

confidence: 99%

Addressing underrepresentation in genomics research through community engagement

Lemke¹,

Esplin²,

Goldenberg³

et al. 2022

The American Journal of Human Genetics

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“…Indeed, further to the idea that trust serves as a foundation for the social contract and democratic governance (and vice versa), trust as an ethical principle requires that citizens are informed about and understand what they agree to. This means that transparency and accountability (i.e., trustworthiness) becomes a necessary ethical norm in the case of data collection, sharing, and storage [ 29 , 30 ].…”

Section: Re-visiting the Social Contractmentioning

confidence: 99%

Managing expectations, rights, and duties in large-scale genomics initiatives: a European comparison

Horn

Merchant

2022

Eur J Hum Genet

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This article reports on the findings of an international workshop organised by the UK-France Genomics and Ethics Network (UK-FR GENE) in 2021. They focus specifically on how collection, storage and sharing of genomic data may pose challenges to established principles and values such as trust, confidentiality, and privacy in countries that have implemented, or are about to implement, large-scale national genomic initiatives. These challenges impact the relationships between patients/citizens and medicine/science, and on each party's rights and duties towards each other. Our geographic scope of comparative analysis includes initiatives underway in England (Genomics England), France (Plan France Médecine Génomique) and Germany (German Human Genome-Phenome Archive). We discuss existing as well as future challenges raised by large-scale health data collection and management in each country. We conclude that the prospects of improving individualised patient healthcare as well as contributing to the scientific and research prosperity of any given nation engaged in health data collection, storage and processing are undeniable. However, we also attempt to demonstrate that biomedical data requires careful management, and transparent and accountable governance structures that are clearly communicated to patients/participants and citizens. Furthermore, when third parties partake as stakeholders, transparent consent protocols relative to data access and use come centre stage, and patient benefits must clearly outweigh commercial interests. Finally, any cross-border data transfer needs to be carefully managed to address incoherencies between regional, national, and supranational regulations and recommendations.

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Towards equitable and trustworthy genomics research

Cited by 35 publications

References 61 publications

Benefit sharing in genomic and biobanking research in Uganda: Perceptions of researchers and research ethics committee members

Benefit sharing in genomic and biobanking research in Uganda: Perceptions of researchers and research ethics committee members

Addressing underrepresentation in genomics research through community engagement

Managing expectations, rights, and duties in large-scale genomics initiatives: a European comparison

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