6 results on '"Ebony Madden"'
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2. Engaging research ethics committees to develop an ethics and governance framework for best practices in genomic research and biobanking in Africa: the H3Africa model
- Author
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Paulina Tindana, Aminu Yakubu, Ciara Staunton, Alice Matimba, Katherine Littler, Ebony Madden, Nchangwi Syntia Munung, Jantina de Vries, and as members of the H3Africa Consortium
- Subjects
Medical philosophy. Medical ethics ,R723-726 - Abstract
Abstract In the past decade, there has been an increase in genomic research and biobanking activities in Africa. Research initiatives such as the Human Heredity and Health in Africa (H3Africa) Consortium are contributing to the development of scientific capacity and infrastructure to support these studies on the continent. Despite this growth, genomic research and biobanking have raised important ethical challenges for key research stakeholders, including members of research ethics committees. One of these is the limited ethical and regulatory frameworks to guide the review and conduct of genomic studies, particularly in Africa. This paper is a reflection on a series of consultative activities with research ethics committees in Africa which informed the development of an ethics and governance framework for best practices in genomic research and biobanking in Africa. The paper highlights the engagement process and the lessoned learned.
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- 2019
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3. Proceedings from the 9th annual conference on the science of dissemination and implementation
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David Chambers, Lisa Simpson, Gila Neta, Ulrica von Thiele Schwarz, Antoinette Percy-Laurry, Gregory A. Aarons, Ross Brownson, Amanda Vogel, Shannon Wiltsey Stirman, Kenneth Sherr, Rachel Sturke, Wynne E. Norton, Allyson Varley, Cynthia Vinson, Lisa Klesges, Suzanne Heurtin-Roberts, M. Rashad Massoud, Leighann Kimble, Arne Beck, Claire Neely, Jennifer Boggs, Carmel Nichols, Wen Wan, Erin Staab, Neda Laiteerapong, Nathalie Moise, Ravi Shah, Susan Essock, Margaret Handley, Amy Jones, Jay Carruthers, Karina Davidson, Lauren Peccoralo, Lloyd Sederer, Todd Molfenter, Ashley Scudder, Sarah Taber-Thomas, Kristen Schaffner, Amy Herschell, Eva Woodward, Jeffery Pitcock, Mona Ritchie, JoAnn Kirchner, Julia E. Moore, Sobia Khan, Shusmita Rashid, Jamie Park, Melissa Courvoisier, Sharon Straus, Daniel Blonigen, Allison Rodriguez, Luisa Manfredi, Andrea Nevedal, Joel Rosenthal, David Smelson, Christine Timko, Nicole Stadnick, Jennifer Regan, Miya Barnett, Anna Lau, Lauren Brookman-Frazee, Erick Guerrero, Karissa Fenwick, Yinfei Kong, Gregory Aarons, Rebecca Lengnick-Hall, Benjamin Henwood, Nina Sayer, Craig Rosen, Robert Orazem, Brandy Smith, Lindsey Zimmerman, David Lounsbury, Rachel Kimerling, Jodie A. Trafton, Steven Lindley, Rahul Bhargava, Hal Roberts, Laura Gibson, Gabriel J. Escobar, Vincent Liu, Benjamin Turk, Arona Ragins, Patricia Kipnis, Ashley Ketterer Gruszkowski, Michael W. Kennedy, Emily Rentschler Drobek, Lior Turgeman, Aleksandra Sasha Milicevic, Terrence L. Hubert, Larissa Myaskovsky, Youxu C. Tjader, Robert J. Monte, Kathryn G. Sapnas, Edmond Ramly, Diane R Lauver, Christie M Bartels, Shereef Elnahal, Andrea Ippolito, Hillary Peabody, Carolyn Clancy, Randall Cebul, Thomas Love, Douglas Einstadter, Shari Bolen, Brook Watts, Vera Yakovchenko, Angela Park, William Lukesh, Donald R. Miller, David Thornton, Mari-Lynn Drainoni, Allen L. Gifford, Shawna Smith, Julia Kyle, Mark S Bauer, Daniel Eisenberg, Celeste Liebrecht, Michelle Barbaresso, Amy Kilbourne, Elyse Park, Giselle Perez, Jamie Ostroff, Sarah Greene, Michael Parchman, Brian Austin, Eric Larson, Stefanie Ferreri, Chris Shea, Megan Smith, Kea Turner, Jennifer Bacci, Kyle Bigham, Geoffrey Curran, Caity Frail, Cory Hamata, Terry Jankowski, Wendy Lantaff, Melissa Somma McGivney, Margie Snyder, Megan McCullough, Chris Gillespie, Beth Ann Petrakis, Ellen Jones, Carol VanDeusen Lukas, Adam Rose, Sarah J. Shoemaker, Jeremy Thomas, Benjamin Teeter, Holly Swan, Appathurai Balamurugan, Meghan Lane-Fall, Rinad Beidas, Laura Di Taranti, Sruthi Buddai, Enrique Torres Hernandez, Jerome Watts, Lee Fleisher, Frances Barg, Isomi Miake-Lye, Tanya Olmos, Emmeline Chuang, Hector Rodriguez, Gerald Kominski, Becky Yano, Stephen Shortell, Mary Hook, Linda Fleisher, Alexander Fiks, Katie Halkyard, Rachel Gruver, Emily Sykes, Kimberly Vesco, Kate Beadle, Joanna Bulkley, Ashley Stoneburner, Michael Leo, Amanda Clark, Joan Smith, Christopher Smyser, Maggie Wolf, Shamik Trivedi, Brian Hackett, Rakesh Rao, F. Sessions Cole, Rose McGonigle, Ann Donze, Enola Proctor, Amit Mathur, Emmanuela Gakidou, Stephen Gloyd, Carolyn Audet, Jose Salato, Sten Vermund, Rivet Amico, Stephanie Smith, Beatha Nyirandagijimana, Hildegarde Mukasakindi, Christian Rusangwa, Molly Franke, Giuseppe Raviola, Matthew Cummings, Elijah Goldberg, Savio Mwaka, Olive Kabajaasi, Adithya Cattamanchi, Achilles Katamba, Shevin Jacob, Nathan Kenya-Mugisha, J. Lucian Davis, Julie Reed, Rohit Ramaswamy, Gareth Parry, Sylvia Sax, Heather Kaplan, Keng-yen Huang, Sabrina Cheng, Susan Yee, Kimberly Hoagwood, Mary McKay, Donna Shelley, Gbenga Ogedegbe, Laurie Miller Brotman, Roman Kislov, John Humphreys, Gill Harvey, Paul Wilson, Robert Lieberthal, Colleen Payton, Mona Sarfaty, George Valko, Rendelle Bolton, Christine Hartmann, Nora Mueller, Sally K. Holmes, Barbara Bokhour, Sarah Ono, Benjamin Crabtree, Leah Gordon, William Miller, Bijal Balasubramanian, Leif Solberg, Deborah Cohen, Kate McGraw, Andrew Blatt, Demietrice Pittman, Helen Kales, Dan Berlowitz, Teresa Hudson, Christian Helfrich, Erin Finley, Ashley Garcia, Kristen Rosen, Claudina Tami, Don McGeary, Mary Jo Pugh, Jennifer Sharpe Potter, Krysttel Stryczek, David Au, Steven Zeliadt, George Sayre, Jennifer Leeman, Allison Myers, Jennifer Grant, Mary Wangen, Tara Queen, Alexandra Morshed, Elizabeth Dodson, Rachel Tabak, Ross C. Brownson, R. Chris Sheldrick, Thomas Mackie, Justeen Hyde, Laurel Leslie, Itzhak Yanovitzky, Matthew Weber, Nicole Gesualdo, Teis Kristensen, Cameo Stanick, Heather Halko, Caitlin Dorsey, Byron Powell, Bryan Weiner, Cara Lewis, Patricia Carreno, Kera Mallard, Tasoula Masina, Candice Monson, Taren Swindle, Zachary Patterson, Leanne Whiteside-Mansell, Rochelle Hanson, Benjamin Saunders, Sonja Schoenwald, Angela Moreland, Sarah Birken, Justin Presseau, David Ganz, Brian Mittman, Deborah Delevan, Jennifer N. Hill, Sara Locatelli, Gemmae Fix, Jeffrey Solomon, Sherri L. Lavela, Victoria Scott, Jonathan Scaccia, Kassy Alia, Brittany Skiles, Abraham Wandersman, Anne Sales, Megan Roberts, Amy Kennedy, Muin J. Khoury, Nina Sperber, Lori Orlando, Janet Carpenter, Larisa Cavallari, Joshua Denny, Amanda Elsey, Fern Fitzhenry, Yue Guan, Carol Horowitz, Julie Johnson, Ebony Madden, Toni Pollin, Victoria Pratt, Tejinder Rakhra-Burris, Marc Rosenman, Corrine Voils, Kristin Weitzel, Ryanne Wu, Laura Damschroder, Christine Lu, Rachel Ceccarelli, Kathleen M. Mazor, Ann Wu, Alanna Kulchak Rahm, Adam H. Buchanan, Marci Schwartz, Cara McCormick, Kandamurugu Manickam, Marc S. Williams, Michael F. Murray, Ngoc-Cam Escoffery, Erin Lebow-Skelley, Hallie Udelson, Elaine Böing, Maria E. Fernandez, Richard J. Wood, Patricia Dolan Mullen, Jenita Parekh, Valerie Caldas, Elizabeth A. Stuart, Shalynn Howard, Gilo Thomas, Jacky M. Jennings, Jennifer Torres, Christine Markham, Ross Shegog, Melissa Peskin, Stephanie Craig Rushing, Amanda Gaston, Gwenda Gorman, Cornelia Jessen, Jennifer Williamson, Dianne Ward, Amber Vaughn, Ellie Morris, Stephanie Mazzucca, Regan Burney, Shoba Ramanadhan, Sara Minsky, Vilma Martinez-Dominguez, Kasisomayajula Viswanath, Megan Barker, Myra Fahim, Arezoo Ebnahmady, Rosa Dragonetti, Peter Selby, Margaret Farrell, Jordan Tompkins, Wynne Norton, Kaelin Rapport, Margaret Hargreaves, Rebekka Lee, Gina Kruse, Charles Deutsch, Emily Lanier, Ashley Gray, Aaron Leppin, Lori Christiansen, Karen Schaepe, Jason Egginton, Megan Branda, Charlene Gaw, Sara Dick, Victor Montori, Nilay Shah, Ariella Korn, Peter Hovmand, Karen Fullerton, Nancy Zoellner, Erin Hennessy, Alison Tovar, Ross Hammond, Christina Economos, Christi Kay, Julie Gazmararian, Emily Vall, Patricia Cheung, Padra Franks, Shannon Barrett-Williams, Paul Weiss, Erica Hamilton, Luana Marques, Louise Dixon, Emily Ahles, Sarah Valentine, Derri Shtasel, Ruben Parra-Cardona, Mary Northridge, Rucha Kavathe, Jennifer Zanowiak, Laura Wyatt, Hardayal Singh, Nadia Islam, Madalena Monteban, Darcy Freedman, Kimberly Bess, Colleen Walsh, Kristen Matlack, Susan Flocke, Heather Baily, Samantha Harden, NithyaPriya Ramalingam, VCE Physical Activity Leadership Team, Rachel Gold, Erika Cottrell, Celine Hollombe, Katie Dambrun, Arwen Bunce, Mary Middendorf, Marla Dearing, Stuart Cowburn, Ned Mossman, Gerry Melgar, Suellen Hopfer, Michael Hecht, Anne Ray, Michelle Miller-Day, Rhonda BeLue, Greg Zimet, Eve-Lynn Nelson, Sandy Kuhlman, Gary Doolittle, Hope Krebill, Ashley Spaulding, Theodore Levin, Michael Sanchez, Molly Landau, Patricia Escobar, Nadia Minian, Aliya Noormohamed, Laurie Zawertailo, Dolly Baliunas, Norman Giesbrecht, Bernard Le Foll, Andriy Samokhvalov, Zachary Meisel, Daniel Polsky, Bruce Schackman, Julia Mitchell, Kaitlyn Sevarino, Sarah Gimbel, Moses Mwanza, Marie Paul Nisingizwe, Catherine Michel, Lisa Hirschhorn, Mahrukh Choudhary, Della Thonduparambil, Paul Meissner, Hilary Pinnock, Melanie Barwick, Christopher Carpenter, Sandra Eldridge, Gonzalo Grandes-Odriozola, Chris Griffiths, Jo Rycroft-Malone, Elizabeth Murray, Anita Patel, Aziz Sheikh, Stephanie J. C. Taylor, Martin Guilliford, Gemma Pearce, Diane Korngiebel, Kathleen West, Wylie Burke, Peggy Hannon, Jeffrey Harris, Kristen Hammerback, Marlana Kohn, Gary K. C. Chan, Riki Mafune, Amanda Parrish, Shirley Beresford, K. Joanne Pike, Rachel Shelton, Lina Jandorf, Deborah Erwin, Thana-Ashley Charles, Laura-Mae Baldwin, Brooke Ike, Jacqueline Fickel, Jason Lind, Diane Cowper, Marguerite Fleming, Amy Sadler, Melinda Dye, Judith Katzburg, Michael Ong, Sarah Tubbesing, Molly Simmons, Autumn Harnish, Sonya Gabrielian, Keith McInnes, Jeffrey Smith, John Ferrand, Elisa Torres, Amy Green, Angela R. Bradbury, Linda J. Patrick-Miller, Brian L. Egleston, Susan M. Domchek, Olufunmilayo I. Olopade, Michael J. Hall, Mary B. Daly, Generosa Grana, Pamela Ganschow, Dominique Fetzer, Amanda Brandt, Rachelle Chambers, Dana F. Clark, Andrea Forman, Rikki S. Gaber, Cassandra Gulden, Janice Horte, Jessica Long, Terra Lucas, Shreshtha Madaan, Kristin Mattie, Danielle McKenna, Susan Montgomery, Sarah Nielsen, Jacquelyn Powers, Kim Rainey, Christina Rybak, Christina Seelaus, Jessica Stoll, Jill Stopfer, Xinxin Shirley Yao, Michelle Savage, Edward Miech, Teresa Damush, Nicholas Rattray, Jennifer Myers, Barbara Homoya, Kate Winseck, Carrie Klabunde, Deb Langer, Avi Aggarwal, Elizabeth Neilson, Lara Gunderson, Marla Gardner, Liam O’Sulleabhain, and Candyce Kroenke
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Medicine (General) ,R5-920 - Published
- 2017
- Full Text
- View/download PDF
4. Model framework for governance of genomic research and biobanking in Africa – a content description [version 2; peer review: 3 approved]
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Aminu Yakubu, Paulina Tindana, Alice Matimba, Katherine Littler, Nchangwi Syntia Munung, Ebony Madden, Ciara Staunton, and Jantina De Vries
- Subjects
Medicine ,Science - Abstract
Genomic research and biobanking are expanding globally, with a promise to fast-track the research needed to improve approaches to disease treatment and prevention through scientific collaborations such as the Human Heredity and Health in Africa (H3Africa) initiative. Integral to this type of research is the availability of samples and data for research. The need for broad access brings along a host of ethical concerns, including those related to privacy and confidentiality, as well as fairness and equity in access and capacity to utilise these samples between scientists from the high income and low income countries. Addressing these concerns while promoting genomic research, especially in Africa, requires the implementation of a sound governance framework. In this paper, we describe the contents of a Framework for Best Practice for Genomics Research and biobanking in Africa that was developed, under the auspices of the H3Africa initiative. This framework is broad enough to be used and adapted by African countries to facilitate the development of country-specific guidelines and to help improve the conduct and governance of genomics research.
- Published
- 2018
- Full Text
- View/download PDF
5. Model framework for governance of genomic research and biobanking in Africa – a content description [version 1; peer review: 3 approved]
- Author
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Aminu Yakubu, Paulina Tindana, Alice Matimba, Katherine Littler, Nchangwi Syntia Munung, Ebony Madden, Ciara Staunton, and Jantina De Vries
- Subjects
Medicine ,Science - Abstract
Genomic research and biobanking are expanding globally, with a promise to fast-track the research needed to improve approaches to disease treatment and prevention through scientific collaborations such as the Human Heredity and Health in Africa (H3Africa) initiative. Integral to this type of research is the availability of samples and data for research. The need for broad access brings along a host of ethical concerns, including those related to privacy and confidentiality, as well as fairness and equity in access and capacity to utilise these samples between scientists from the high income and low income countries. Addressing these concerns while promoting genomic research, especially in Africa, requires the implementation of a sound governance framework. In this paper, we describe the contents of a Framework for Best Practice for Genomics Research and biobanking in Africa that was developed, under the auspices of the H3Africa initiative. This framework is broad enough to be used and adapted by African countries to facilitate the development of country-specific guidelines and to help improve the conduct and governance of genomics research.
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- 2018
- Full Text
- View/download PDF
6. Guideline for feedback of individual genetic research findings for genomics research in Africa
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Alice Matimba, Stuart Ali, Katherine Littler, Ebony Madden, Patricia Marshall, Sheryl McCurdy, Victoria Nembaware, Laura Rodriguez, Janet Seeley, Paulina Tindana, Aminu Yakubu, and Jantina de Vries
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Genetic Research ,Practice ,Medicine (General) ,Public Health, Environmental and Occupational Health ,health policy ,Genomics ,Infectious and parasitic diseases ,RC109-216 ,health services research ,Feedback ,R5-920 ,Africa ,Humans - Abstract
As human genomics research in Africa continues to generate large amounts of data, ethical issues arise regarding how actionable genetic information is shared with research participants. The Human Heredity and Health in Africa Consortium (H3Africa) Ethics and Community Engagement Working group acknowledged the need for such guidance, identified key issues and principles relevant to genomics research in Africa and developed a practical guideline for consideration of feeding back individual genetic results of health importance in African research projects. This included a decision flowchart, providing a logical framework to assist in decision-making and planning for human genomics research projects. Although presented in the context of the H3Africa Consortium, we believe the principles described, and the decision flowchart presented here is applicable more broadly in African genomics research.
- Published
- 2022
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