Return of results and data to study participants

Wylie Burke, Barbara J Evans, Gail P Jarvik, Return of results: Ethical and legal distinctions between research and clinical care American Journal of Medical Genetics Part C-seminars in Medical Genetics. ,vol. 166, pp. 105- 111 ,(2014) , 10.1002/AJMG.C.31393

Gail P Jarvik, Laura M Amendola, Jonathan S Berg, Kyle Brothers, Ellen W Clayton, Wendy Chung, Barbara J Evans, James P Evans, Stephanie M Fullerton, Carlos J Gallego, Garrison Nanibaa’A, Stacy W Gray, Ingrid A Holm, Iftikhar J Kullo, Lisa Soleymani Lehmann, Cathy McCarty, Cynthia A Prows, Heidi L Rehm, Richard R Sharp, Joseph Salama, Saskia Sanderson, Sara L Van Driest, Marc S Williams, Susan M Wolf, Wendy A Wolf, John Harley, Melanie Myers, Bahram Namjou, Sander Vinks, John Connolly, Brendan Keating, Glenn Gerhard, Agnes Sundaresan, Gerard Tromp, David Crosslin, Kathy Leppig, Cathy Wicklund, Christopher Chute, John Lynch, Mariza De Andrade, John Heit, Jen McCormick, Murray Brilliant, Terrie Kitchner, Marylyn Ritchie, Erwin Böttinger, Inga Peter, Stephen Persell, Laura Rasmussen-Torvik, Tracy McGregor, Dan Roden, Armand Antommaria, Rosetta Chiavacci, Andy Faucett, David Ledbetter, Janet Williams, Andrea Hartzler, Carolyn R Rohrer Vitek, Norm Frost, Kadija Ferryman, Carol Horowitz, Rosamond Rhodes, Randi Zinberg, Sharon Aufox, Vivian Pan, Rochelle Long, Erin Ramos, Jackie Odgis, Anastasia Wise, Sara Hull, Jonathan Gitlin, Robert Green, Danielle Metterville, Amy McGuire, Sek Won Kong, Sue Trinidad, David Veenstra, Myra Roche, Debra Skinner, Kelly Raspberry, Julianne O’Daniel, Will Parsons, Christine Eng, Susan Hilsenbeck, Dean Karavite, Laura Conlin, Nancy Spinner, Ian Krantz, Marni Falk, Avni Santani, Elizabeth Dechene, Matthew Dulik, Barbara Bernhardt, Scott Schuetze, Jessica Everett, Michele Caroline Gornick, Ben Wilfond, Holly Tabor, Amy A Lemke, Sue Richards, Katrina Goddard, Greg Cooper, Kelly East, Greg Barsh, Barbara Koenig, Eliezer Van Allen, Judy Garber, Jeremy Garrett, Michelle Lewis, Sarah Savage, Maureen Smith, Sameek Roychowdhury, Alice Bailey, Benjamin Berkman, Charlisse Caga Anan, Lucia Hindorff, Carolyn Hutter, Rosalind King, Rongling Li, Nicole Lockhart, Jean McEwen, Derek Scholes, Sheri Schully, Kathie Sun, Wylie Burke, None, Return of Genomic Results to Research Participants: The Floor, the Ceiling, and the Choices In Between American Journal of Human Genetics. ,vol. 94, pp. 818- 826 ,(2014) , 10.1016/J.AJHG.2014.04.009

Susan M. Wolf, Frances P. Lawrenz, Charles A. Nelson, Jeffrey P. Kahn, Mildred K. Cho, Ellen Wright Clayton, Joel G. Fletcher, Michael K. Georgieff, Dale Hammerschmidt, Kathy Hudson, Judy Illes, Vivek Kapur, Moira A. Keane, Barbara A. Koenig, Bonnie S. LeRoy, Elizabeth G. McFarland, Jordan Paradise, Lisa S. Parker, Sharon F. Terry, Brian Van Ness, Benjamin S. Wilfond, Managing incidental findings in human subjects research: Analysis and recommendations Journal of Law Medicine & Ethics. ,vol. 36, pp. 219- 248 ,(2008) , 10.1111/J.1748-720X.2008.00266.X

Christine Grady, Do IRBs Protect Human Research Participants? JAMA. ,vol. 304, pp. 1122- 1123 ,(2010) , 10.1001/JAMA.2010.1304

Susan M Wolf, Brittney N Crock, Brian Van Ness, Frances Lawrenz, Jeffrey P Kahn, Laura M Beskow, Mildred K Cho, Michael F Christman, Robert C Green, Ralph Hall, Judy Illes, Moira Keane, Bartha M Knoppers, Barbara A Koenig, Isaac S Kohane, Bonnie LeRoy, Karen J Maschke, William McGeveran, Pilar Ossorio, Lisa S Parker, Gloria M Petersen, Henry S Richardson, Joan A Scott, Sharon F Terry, Benjamin S Wilfond, Wendy A Wolf, None, Managing incidental findings and research results in genomic research involving biobanks and archived data sets. Genetics in Medicine. ,vol. 14, pp. 361- 384 ,(2012) , 10.1038/GIM.2012.23

Richard R Fabsitz, Amy McGuire, Richard R Sharp, Mona Puggal, Laura M Beskow, Leslie G Biesecker, Ebony Bookman, Wylie Burke, Esteban Gonzalez Burchard, George Church, Ellen Wright Clayton, John H Eckfeldt, Conrad V Fernandez, Rebecca Fisher, Stephanie M Fullerton, Stacey Gabriel, Francine Gachupin, Cynthia James, Gail P Jarvik, Rick Kittles, Jennifer R Leib, Christopher O'Donnell, P Pearl O'Rourke, Laura Lyman Rodriguez, Sheri D Schully, Alan R Shuldiner, Rebecca KF Sze, Joseph V Thakuria, Susan M Wolf, Gregory L Burke, None, Ethical and practical guidelines for reporting genetic research results to study participants: Updated guidelines from a national heart, lung, and blood institute working group Circulation-cardiovascular Genetics. ,vol. 3, pp. 574- 580 ,(2010) , 10.1161/CIRCGENETICS.110.958827

Katherine E Boronow, Herbert P Susmann, Krzysztof Z Gajos, Ruthann A Rudel, Kenneth C Arnold, Phil Brown, Rachel Morello-Frosch, Laurie Havas, Julia Green Brody, None, DERBI: A Digital Method to Help Researchers Offer “Right-to-Know” Personal Exposure Results Environmental Health Perspectives. ,vol. 125, pp. 27- 33 ,(2017) , 10.1289/EHP702

Adrian Thorogood, Jason Bobe, Barbara Prainsack, Anna Middleton, Erick Scott, Sarah Nelson, Manuel Corpas, Natasha Bonhomme, Laura Lyman Rodriguez, Madeleine Murtagh, Erika Kleiderman, Participant Values Task Team of the Global Alliance for Genomics and Health, None, APPLaUD: access for patients and participants to individual level uninterpreted genomic data. Human Genomics. ,vol. 12, pp. 7- 7 ,(2018) , 10.1186/S40246-018-0139-5