Public Perspectives on Returning Genetics and Genomics Research Results

Abstract Background The return of genetics and genomics research results has been a subject of ongoing global debate. Such feedback is ethically desirable to update participants on research findings particularly those deemed clinically significant. Although there is limited literature, debate continues in African on what constitutes appropriate practice regarding the return of results for genetics and genomics research. This study explored perspectives and ethical considerations of Ugandan genomics researchers regarding the return of genetics and genomics research results. Methods This was a qualitative study that employed in-depth interviews. Thirty participants were purposively selected based on their expertise as genomics researchers in Uganda. Data were analysed through content analysis along the main themes of the study using a comprehensive thematic matrix, to identify common patterns arising from the narratives. NVivo software 12 was used to support data analysis. Results The return of genetics and genomics research results was generally acceptable to researchers, and some indicated that they had previously returned individual or aggregate results to participants and communities. The main reasons cited for sharing research results with participants included their clinical utility, actionability and overall benefit to society. Ethical considerations for appropriate return of results included a need for effective community engagement, genetic counselling prior to disclosure of the results, adequate informed consent, and proper assessment of the implications of, or consequences of returning of results. However, the approaches to return of results were perceived as unstandardized due to the lack of appropriate regulatory frameworks. Conclusions The return of genetic and genomic research results is generally acceptable to researchers despite the lack of appropriate regulatory frameworks. Ethical considerations for return of genetics and genomics research results are highly divergent, hence the need for national ethical guidelines to appropriately regulate the practice.

Download Full-text

Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda

10.21203/rs.3.rs-355303/v1 ◽

2021 ◽

Author(s):

Joseph Ochieng ◽

Betty Kwagala ◽

John Barugahare ◽

Erisa Mwaka ◽

Deborah Ekusai-Sebatta ◽

...

Keyword(s):

Content Analysis ◽

Qualitative Study ◽

Structured Interview ◽

Return Of Results ◽

Ethical Guidelines ◽

Ethical Considerations ◽

Research Results ◽

Active Involvement ◽

Genomics Research ◽

Genetics And Genomics

Abstract Background: Return of genetics and genomics research results has been a subject of ongoing global debate on what constitutes socially acceptable and ethical approaches for sharing individual and aggregate genomic results with participants. Such feedback to research participants is an ethical requirement to update participants on results related to the study particularly those that are deemed significant. Although there is limited literature, debate continues in the African setting on what constitutes appropriate practice regarding return of results for genetics and genomics research.The study explored the perspectives and ethical considerations of genomics researchers for return of genetics and genomics research results in a Ugandan setting.Methods: This was a qualitative study of researchers in Uganda using semi-structured interview schedules for In-depth interviews. The researchers were purposively selected based on their active involvement in conducting genetics and genomics research in the country. A total of 30 researchers participated in the study and were interviewed on their perspectives and ethical considerations for the return of genetics and genomics research results. Data were analysed through content analysis along the main themes of the study. Content analysis was conducted using a comprehensive thematic matrix, to identify common patterns arising from the narratives. QSR International NVivo software was used to support data analysis. Findings: Return of genetics and genomics research results was generally acceptable to genomics researchers and some researchers had either returned individual or aggregate results. The main reasons for sharing results included actionability, benefits and the clinical utility of the results to the participants. Ethical considerations for appropriate return of results included a need for effective community engagement, genetic counselling prior to disclosure of the results, adequate informed consent and proper assessment of the implications of, or consequences of returning of results. However, the approaches to return of results is not standardised due to lack of ethics and regulatory guidelines to govern the practice in the country.Conclusion: Return of genetics and genomics research results to participants is generally acceptable to genomics researchers and several researchers have returned either individual or aggregate results. Ethical considerations for return of genetics and genomics research results are numerous though their application is not regulated due to lack of appropriate local ethical guidelines.

Download Full-text

Embracing an “African Ethos” to facilitate African immigrants participation in medical genetics and genomics research

Nursing Outlook ◽

10.1016/j.outlook.2016.08.001 ◽

2017 ◽

Vol 65 (1) ◽

pp. 9-17 ◽

Cited By ~ 8

Author(s):

Aaron G. Buseh ◽

Patricia E. Stevens ◽

Sandra Millon-Underwood ◽

Sheryl T. Kelber ◽

Leolia Townsend

Keyword(s):

African Immigrants ◽

Medical Genetics ◽

Genomics Research ◽

Genetics And Genomics

Download Full-text

Human genetics and genomics research in Ecuador: historical survey, current state, and future directions

Human Genomics ◽

10.1186/s40246-019-0249-8 ◽

2019 ◽

Vol 13 (1) ◽

Author(s):

Marlon S. Zambrano-Mila ◽

Spiros N. Agathos ◽

Juergen K. V. Reichardt

Keyword(s):

Human Genetics ◽

Genetic Diseases ◽

Historical Record ◽

Genomic Research ◽

Current Status ◽

Forensic Sciences ◽

Resource Limited ◽

Genomics Research ◽

Comprehensive Picture ◽

Genetics And Genomics

Abstract Background In South America, the history of human genetics is extensive and its beginnings go back to the onset of the twentieth century. In Ecuador, the historical record of human genetics and genomics research is limited. In this context, our work analyzes the current status and historical panorama of these fields, based on bibliographic searches in Scopus, Google Scholar, PubMed, and Web of Science. Results Our results determined that the oldest paper in human genetics coauthored by an Ecuadorian institution originates from the Central University of Ecuador in 1978. From a historical standpoint, the number of articles has increased since the 1990s. This growth has intensified and it is reflected in 137 manuscripts recorded from 2010 to 2019. Areas such as human population genetics, phylogeography, and forensic sciences are the core of genetics and genomics-associated research in Ecuador. Important advances have been made in the understanding of the bases of cancer, some genetic diseases, and congenital disorders. Fields such as pharmacogenetics and pharmacogenomics have begun to be explored during the last years. Conclusions This work paints a comprehensive picture and provides additional insights into the future panorama of human genetic and genomic research in Ecuador as an example of an emerging, resource-limited country with interesting phylogeographic characteristics and public health implications.

Download Full-text

Do solidarity and reciprocity obligations compel African researchers to feedback individual genetic results in genomics research?

BMC Medical Ethics ◽

10.1186/s12910-020-00549-4 ◽

2020 ◽

Vol 21 (1) ◽

Author(s):

Dimpho Ralefala ◽

Mary Kasule ◽

Ambroise Wonkam ◽

Mogomotsi Matshaba ◽

Jantina de Vries

Keyword(s):

Genetic Research ◽

Research Participation ◽

Ethical Question ◽

Group Discussions ◽

Future Studies ◽

Research Results ◽

Genomic Study ◽

Genomics Research ◽

Depth Interviews ◽

Parents And Caregivers

Abstract Background A key ethical question in genomics research relates to whether individual genetic research results should be disclosed to research participants and if so, which results are to be disclosed, by whom and when. Whilst this issue has received only scarce attention in African bioethics discourse, the extension of genomics research to the African continent has brought it into sharp focus. Methods In this qualitative study, we examined the views of adolescents, parents and caregivers participating in a paediatric and adolescent HIV-TB genomic study in Botswana on how solidarity and reciprocity obligations could guide decisions about feedback of individual genetic research results. Data were collected using deliberative focus group discussions and in-depth interviews. Results Findings from 93 participants (44 adolescents and 49 parents and caregivers) demonstrated the importance of considering solidarity and reciprocity obligations in decisions about the return of individual genetic research results to participants. Participants viewed research participation as a mutual relationship and expressed that return of research results would be one way in which research participation could be reciprocated. They noted that when reciprocity obligations are respected, participants feel valued and not respecting reciprocity expectations could undermine participant trust and participation in future studies. Conclusions We conclude that expectations of solidarity and reciprocity could translate into an obligation to feedback selected individual genetic research results in African genomics research.

Download Full-text

Scott, Prof. James, (born 13 Sept. 1946), Professor of Medicine, since 1997 and Deputy Principal for Research, since 2000, Imperial College London (Deputy Vice-Principal, 1997–2000); Director, Imperial College Genetics and Genomics Research Institute, 2000

10.1093/ww/9780199540884.013.34141 ◽

2007 ◽

Keyword(s):

Imperial College ◽

Genomics Research ◽

Genetics And Genomics ◽

Vice Principal ◽

Research Institute

Download Full-text

Understanding Incidental Findings in the Context of Genetics and Genomics

The Journal of Law Medicine & Ethics ◽

10.1111/j.1748-720x.2008.00270.x ◽

2008 ◽

Vol 36 (2) ◽

pp. 280-285 ◽

Cited By ~ 91

Author(s):

Mildred K. Cho

Keyword(s):

Incidental Findings ◽

Human Subjects ◽

Association Studies ◽

Human Migration ◽

Genomic Research ◽

Human Subjects Research ◽

Research Results ◽

Yield Information ◽

Individual Research Results ◽

Genetics And Genomics

Human genetic and genomic research can yield information that may be of clinical relevance to the individuals who participate as subjects of the research. However, no consensus exists as yet on the responsibilities of researchers to disclose individual research results to participants in human subjects research. “Genetic and genomic research” on humans varies widely, including association studies, examination of allele frequencies, and studies of natural selection, human migration, and genetic variation. For the purposes of this article, it is defined broadly to include analysis of DNA collected from humans that has implications for human health (even if the purpose of the study is not medical). This paper addresses both research results of individual research participants that may be an intended product of the research, as well as unanticipated, “incidental” findings.

Download Full-text

From Mouse to Man

Annual Review of Nursing Research ◽

10.1891/0739-6686.29.99 ◽

2011 ◽

Vol 29 (1) ◽

pp. 99-112

Author(s):

Cynthia L. Renn ◽

Susan G. Dorsey

Keyword(s):

Animal Model ◽

Animal Models ◽

Human Disease ◽

Research Process ◽

Critical Component ◽

Exponential Expansion ◽

Genomics Research ◽

The Common ◽

Genetics And Genomics ◽

Careful Thought

Animal models are a critical component of biomedical and biobehavioral research and have contributed to the exponential expansion of our understanding of human disease. Now, as we move onward into the era of genetics and genomics research, the importance of animal models to the research process will become even more acute as we explore the significance of genetic differences that are found in the presence and absence of disease. The decision to use an animal model is not one that can be taken lightly; but, rather, requires careful thought and consideration. In this review, we will address (a) why we should consider using animal models, (b) several caveats that are associated with using animals for research, and (c) some of the common genetic tools that are used in animal research.

Download Full-text