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Stakeholder Perspectives on Public Health Genomics Applications for Sickle Cell Disease: A Methodology for a Human Heredity and Health in Africa (H3Africa) Qualitative Research Study

Publication ,  Journal Article
Treadwell, MJ; Makani, J; Ohene-Frempong, K; Ofori-Acquah, S; McCurdy, S; De Vries, J; Bukini, D; Dennis-Antwi, J; Kamga, KK; Mbekenga, C ...
Published in: OMICS A Journal of Integrative Biology
June 1, 2017

Advances in omics technologies alone are not a guarantee that science will translate to robust responsible innovation that is firmly grounded in societal values. This study aimed to identify best practices for Ethical, Legal, and Social Implications (ELSI) research in Africa that allows for optimal integration of community perspectives into the design and implementation of genomics research. In a large sample of 346 stakeholders in Cameroon, Ghana, and Tanzania (59% women), we used a qualitative study design with a phenomenological approach and conducted 32 group and 74 individual interviews (25% rural). We imported interview recordings into NVivo software for analysis. We created a "concept map" to organize the coded information, with Perspectives on Genomics and Sickle Cell Disease (SCD) Public Health Interventions as the central themes. We found that (1) analyses of major subthemes across and within countries revealed differential knowledge and experiences of SCD, and perspectives on various aspects of research and genomics; (2) we were able to gather empirical data efficiently from urban and rural stakeholders, to study the issues related to sample sharing, consent processes, and return of clinical and genomic study results; (3) the concept of nondirectiveness in modern genetic medicine practice can be challenged by the views of stakeholders in the context of a high-burden disease such as SCD; and (4) linking community views to current and proposed public health interventions could be understood within the context of each specific country. Our work informs future qualitative social science and technology policy research designs on genomics applications in Africa.

Duke Scholars

Published In

OMICS A Journal of Integrative Biology

DOI

EISSN

1557-8100

ISSN

1536-2310

Publication Date

June 1, 2017

Volume

21

Issue

6

Start / End Page

323 / 332

Related Subject Headings

  • Bioinformatics
  • 31 Biological sciences
  • 06 Biological Sciences
 

Citation

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Treadwell, M. J., Makani, J., Ohene-Frempong, K., Ofori-Acquah, S., McCurdy, S., De Vries, J., … Wonkam, A. (2017). Stakeholder Perspectives on Public Health Genomics Applications for Sickle Cell Disease: A Methodology for a Human Heredity and Health in Africa (H3Africa) Qualitative Research Study. OMICS A Journal of Integrative Biology, 21(6), 323–332. https://doi.org/10.1089/omi.2017.0047
Treadwell, M. J., J. Makani, K. Ohene-Frempong, S. Ofori-Acquah, S. McCurdy, J. De Vries, D. Bukini, et al. “Stakeholder Perspectives on Public Health Genomics Applications for Sickle Cell Disease: A Methodology for a Human Heredity and Health in Africa (H3Africa) Qualitative Research Study.” OMICS A Journal of Integrative Biology 21, no. 6 (June 1, 2017): 323–32. https://doi.org/10.1089/omi.2017.0047.
Treadwell MJ, Makani J, Ohene-Frempong K, Ofori-Acquah S, McCurdy S, De Vries J, et al. Stakeholder Perspectives on Public Health Genomics Applications for Sickle Cell Disease: A Methodology for a Human Heredity and Health in Africa (H3Africa) Qualitative Research Study. OMICS A Journal of Integrative Biology. 2017 Jun 1;21(6):323–32.
Treadwell, M. J., et al. “Stakeholder Perspectives on Public Health Genomics Applications for Sickle Cell Disease: A Methodology for a Human Heredity and Health in Africa (H3Africa) Qualitative Research Study.” OMICS A Journal of Integrative Biology, vol. 21, no. 6, June 2017, pp. 323–32. Scopus, doi:10.1089/omi.2017.0047.
Treadwell MJ, Makani J, Ohene-Frempong K, Ofori-Acquah S, McCurdy S, De Vries J, Bukini D, Dennis-Antwi J, Kamga KK, Mbekenga C, Wonkam ET, Tangwa G, Royal CD, Wonkam A. Stakeholder Perspectives on Public Health Genomics Applications for Sickle Cell Disease: A Methodology for a Human Heredity and Health in Africa (H3Africa) Qualitative Research Study. OMICS A Journal of Integrative Biology. 2017 Jun 1;21(6):323–332.
Journal cover image

Published In

OMICS A Journal of Integrative Biology

DOI

EISSN

1557-8100

ISSN

1536-2310

Publication Date

June 1, 2017

Volume

21

Issue

6

Start / End Page

323 / 332

Related Subject Headings

  • Bioinformatics
  • 31 Biological sciences
  • 06 Biological Sciences