Annelien L Bredenoord, N Charlotte Onland-Moret, Johannes J M Van Delden. Hum Mutat 2011
Times Cited: 80
Times Cited: 80
Times Cited
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Disclosure of individual genetic data to research participants: the debate reconsidered.
Annelien L Bredenoord, Hester Y Kroes, Edwin Cuppen, Michael Parker, Johannes J M van Delden. Trends Genet 2011
Annelien L Bredenoord, Hester Y Kroes, Edwin Cuppen, Michael Parker, Johannes J M van Delden. Trends Genet 2011
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Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group.
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,[...]. Circ Cardiovasc Genet 2010
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,[...]. Circ Cardiovasc Genet 2010
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Managing incidental findings in human subjects research: analysis and recommendations.
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,[...]. J Law Med Ethics 2008
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,[...]. J Law Med Ethics 2008
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Deploying whole genome sequencing in clinical practice and public health: meeting the challenge one bin at a time.
Jonathan S Berg, Muin J Khoury, James P Evans. Genet Med 2011
Jonathan S Berg, Muin J Khoury, James P Evans. Genet Med 2011
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ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing.
Robert C Green, Jonathan S Berg, Wayne W Grody, Sarah S Kalia, Bruce R Korf, Christa L Martin, Amy L McGuire, Robert L Nussbaum, Julianne M O'Daniel, Kelly E Ormond,[...]. Genet Med 2013
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Managing incidental findings and research results in genomic research involving biobanks and archived data sets.
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,[...]. Genet Med 2012
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,[...]. Genet Med 2012
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The emergence of an ethical duty to disclose genetic research results: international perspectives.
Bartha Maria Knoppers, Yann Joly, Jacques Simard, Francine Durocher. Eur J Hum Genet 2006
Bartha Maria Knoppers, Yann Joly, Jacques Simard, Francine Durocher. Eur J Hum Genet 2006
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Public preferences regarding the return of individual genetic research results: findings from a qualitative focus group study.
Juli Murphy Bollinger, Joan Scott, Rachel Dvoskin, David Kaufman. Genet Med 2012
Juli Murphy Bollinger, Joan Scott, Rachel Dvoskin, David Kaufman. Genet Med 2012
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Offering individual genetic research results: context matters.
Laura M Beskow, Wylie Burke. Sci Transl Med 2010
Laura M Beskow, Wylie Burke. Sci Transl Med 2010
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The legal risks of returning results of genomics research.
Ellen Wright Clayton, Amy L McGuire. Genet Med 2012
Ellen Wright Clayton, Amy L McGuire. Genet Med 2012
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Reporting genetic results in research studies: summary and recommendations of an NHLBI working group.
Ebony B Bookman, Aleisha A Langehorne, John H Eckfeldt, Kathleen C Glass, Gail P Jarvik, Michael Klag, Greg Koski, Arno Motulsky, Benjamin Wilfond, Teri A Manolio,[...]. Am J Med Genet A 2006
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Research ethics and the challenge of whole-genome sequencing.
Amy L McGuire, Timothy Caulfield, Mildred K Cho. Nat Rev Genet 2008
Amy L McGuire, Timothy Caulfield, Mildred K Cho. Nat Rev Genet 2008
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Public expectations for return of results from large-cohort genetic research.
Juli Murphy, Joan Scott, David Kaufman, Gail Geller, Lisa LeRoy, Kathy Hudson. Am J Bioeth 2008
Juli Murphy, Joan Scott, David Kaufman, Gail Geller, Lisa LeRoy, Kathy Hudson. Am J Bioeth 2008
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Research ethics recommendations for whole-genome research: consensus statement.
Timothy Caulfield, Amy L McGuire, Mildred Cho, Janet A Buchanan, Michael M Burgess, Ursula Danilczyk, Christina M Diaz, Kelly Fryer-Edwards, Shane K Green, Marc A Hodosh,[...]. PLoS Biol 2008
Timothy Caulfield, Amy L McGuire, Mildred Cho, Janet A Buchanan, Michael M Burgess, Ursula Danilczyk, Christina M Diaz, Kelly Fryer-Edwards, Shane K Green, Marc A Hodosh,[...]. PLoS Biol 2008
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The incidentalome: a threat to genomic medicine.
Isaac S Kohane, Daniel R Masys, Russ B Altman. JAMA 2006
Isaac S Kohane, Daniel R Masys, Russ B Altman. JAMA 2006
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Understanding incidental findings in the context of genetics and genomics.
Mildred K Cho. J Law Med Ethics 2008
Mildred K Cho. J Law Med Ethics 2008
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Disclosing individual results of clinical research: implications of respect for participants.
David I Shalowitz, Franklin G Miller. JAMA 2005
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Informed consent for whole genome sequencing: a qualitative analysis of participant expectations and perceptions of risks, benefits, and harms.
Holly K Tabor, Jacquie Stock, Tracy Brazg, Margaret J McMillin, Karin M Dent, Joon-Ho Yu, Jay Shendure, Michael J Bamshad. Am J Med Genet A 2012
Holly K Tabor, Jacquie Stock, Tracy Brazg, Margaret J McMillin, Karin M Dent, Joon-Ho Yu, Jay Shendure, Michael J Bamshad. Am J Med Genet A 2012
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Genomics really gets personal: how exome and whole genome sequencing challenge the ethical framework of human genetics research.
Holly K Tabor, Benjamin E Berkman, Sara Chandros Hull, Michael J Bamshad. Am J Med Genet A 2011
Holly K Tabor, Benjamin E Berkman, Sara Chandros Hull, Michael J Bamshad. Am J Med Genet A 2011
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To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts.
Gabrielle M Christenhusz, Koenraad Devriendt, Kris Dierickx. Eur J Hum Genet 2013
Gabrielle M Christenhusz, Koenraad Devriendt, Kris Dierickx. Eur J Hum Genet 2013
10
Whole-genome sequencing in health care: recommendations of the European Society of Human Genetics.
Carla G van El, Martina C Cornel, Pascal Borry, Ros J Hastings, Florence Fellmann, Shirley V Hodgson, Heidi C Howard, Anne Cambon-Thomsen, Bartha M Knoppers, Hanne Meijers-Heijboer,[...]. Eur J Hum Genet 2013
Carla G van El, Martina C Cornel, Pascal Borry, Ros J Hastings, Florence Fellmann, Shirley V Hodgson, Heidi C Howard, Anne Cambon-Thomsen, Bartha M Knoppers, Hanne Meijers-Heijboer,[...]. Eur J Hum Genet 2013
10
Next-generation sequencing: does the next generation still have a right to an open future?
Annelien L Bredenoord, Martine C de Vries, Johannes J M van Delden. Nat Rev Genet 2013
Annelien L Bredenoord, Martine C de Vries, Johannes J M van Delden. Nat Rev Genet 2013
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"I want to know what's in Pandora's Box": comparing stakeholder perspectives on incidental findings in clinical whole genomic sequencing.
Anne Townsend, Shelin Adam, Patricia H Birch, Zoe Lohn, Francois Rousseau, Jan M Friedman. Am J Med Genet A 2012
Anne Townsend, Shelin Adam, Patricia H Birch, Zoe Lohn, Francois Rousseau, Jan M Friedman. Am J Med Genet A 2012
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Ethical implications of the use of whole genome methods in medical research.
Jane Kaye, Paula Boddington, Jantina de Vries, Naomi Hawkins, Karen Melham. Eur J Hum Genet 2010
Jane Kaye, Paula Boddington, Jantina de Vries, Naomi Hawkins, Karen Melham. Eur J Hum Genet 2010
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Multidimensional results reporting to participants in genomic studies: getting it right.
Isaac S Kohane, Patrick L Taylor. Sci Transl Med 2010
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Is it ethical to deny genetic research participants individualised results?
P Affleck. J Med Ethics 2009
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Genomic inheritances: disclosing individual research results from whole-exome sequencing to deceased participants' relatives.
Ben Chan, Flavia M Facio, Haley Eidem, Sara Chandros Hull, Leslie G Biesecker, Benjamin E Berkman. Am J Bioeth 2012
Ben Chan, Flavia M Facio, Haley Eidem, Sara Chandros Hull, Leslie G Biesecker, Benjamin E Berkman. Am J Bioeth 2012
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Taxonomizing, sizing, and overcoming the incidentalome.
Isaac S Kohane, Michael Hsing, Sek Won Kong. Genet Med 2012
Isaac S Kohane, Michael Hsing, Sek Won Kong. Genet Med 2012
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Disclosing individual genetic results to research participants.
Vardit Ravitsky, Benjamin S Wilfond. Am J Bioeth 2006
Vardit Ravitsky, Benjamin S Wilfond. Am J Bioeth 2006
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Disclosing pathogenic genetic variants to research participants: quantifying an emerging ethical responsibility.
Christopher A Cassa, Sarah K Savage, Patrick L Taylor, Robert C Green, Amy L McGuire, Kenneth D Mandl. Genome Res 2012
Christopher A Cassa, Sarah K Savage, Patrick L Taylor, Robert C Green, Amy L McGuire, Kenneth D Mandl. Genome Res 2012
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Intentions to receive individual results from whole-genome sequencing among participants in the ClinSeq study.
Flavia M Facio, Haley Eidem, Tyler Fisher, Stephanie Brooks, Amy Linn, Kimberly A Kaphingst, Leslie G Biesecker, Barbara B Biesecker. Eur J Hum Genet 2013
Flavia M Facio, Haley Eidem, Tyler Fisher, Stephanie Brooks, Amy Linn, Kimberly A Kaphingst, Leslie G Biesecker, Barbara B Biesecker. Eur J Hum Genet 2013
8
Ethical, legal, and counseling challenges surrounding the return of genetic results in oncology.
Martijn P Lolkema, Christa G Gadellaa-van Hooijdonk, Annelien L Bredenoord, Peter Kapitein, Nancy Roach, Edwin Cuppen, Nine V Knoers, Emile E Voest. J Clin Oncol 2013
Martijn P Lolkema, Christa G Gadellaa-van Hooijdonk, Annelien L Bredenoord, Peter Kapitein, Nancy Roach, Edwin Cuppen, Nine V Knoers, Emile E Voest. J Clin Oncol 2013
12
Returning genetic research results to individuals: points-to-consider.
Gaile Renegar, Christopher J Webster, Steffen Stuerzebecher, Lea Harty, Susan E Ide, Beth Balkite, Taryn A Rogalski-Salter, Nadine Cohen, Brian B Spear, Diane M Barnes,[...]. Bioethics 2006
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Disclosure of individual research results in clinico-genomic trials: challenges, classification and criteria for decision-making.
Regine Kollek, Imme Petersen. J Med Ethics 2011
Regine Kollek, Imme Petersen. J Med Ethics 2011
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Researcher practices on returning genetic research results.
Christopher Heaney, Genevieve Tindall, Joe Lucas, Susanne B Haga. Genet Test Mol Biomarkers 2010
Christopher Heaney, Genevieve Tindall, Joe Lucas, Susanne B Haga. Genet Test Mol Biomarkers 2010
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Incidental findings in human subjects research: what do investigators owe research participants?
Franklin G Miller, Michelle M Mello, Steven Joffe. J Law Med Ethics 2008
Franklin G Miller, Michelle M Mello, Steven Joffe. J Law Med Ethics 2008
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Opportunities and challenges for the integration of massively parallel genomic sequencing into clinical practice: lessons from the ClinSeq project.
Leslie G Biesecker. Genet Med 2012
Leslie G Biesecker. Genet Med 2012
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Incidental findings in genetic research and clinical diagnostic tests: a systematic review.
Leigh Jackson, Lesley Goldsmith, Anita O'Connor, Heather Skirton. Am J Med Genet A 2012
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Researcher perspectives on disclosure of incidental findings in genetic research.
Meredith C Meacham, Helene Starks, Wylie Burke, Kelly Edwards. J Empir Res Hum Res Ethics 2010
Meredith C Meacham, Helene Starks, Wylie Burke, Kelly Edwards. J Empir Res Hum Res Ethics 2010
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Exploring concordance and discordance for return of incidental findings from clinical sequencing.
Robert C Green, Jonathan S Berg, Gerard T Berry, Leslie G Biesecker, David P Dimmock, James P Evans, Wayne W Grody, Madhuri R Hegde, Sarah Kalia, Bruce R Korf,[...]. Genet Med 2012
Robert C Green, Jonathan S Berg, Gerard T Berry, Leslie G Biesecker, David P Dimmock, James P Evans, Wayne W Grody, Madhuri R Hegde, Sarah Kalia, Bruce R Korf,[...]. Genet Med 2012
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From patients to partners: participant-centric initiatives in biomedical research.
Jane Kaye, Liam Curren, Nick Anderson, Kelly Edwards, Stephanie M Fullerton, Nadja Kanellopoulou, David Lund, Daniel G MacArthur, Deborah Mascalzoni, James Shepherd,[...]. Nat Rev Genet 2012
Jane Kaye, Liam Curren, Nick Anderson, Kelly Edwards, Stephanie M Fullerton, Nadja Kanellopoulou, David Lund, Daniel G MacArthur, Deborah Mascalzoni, James Shepherd,[...]. Nat Rev Genet 2012
7
Motivators for participation in a whole-genome sequencing study: implications for translational genomics research.
Flavia M Facio, Stephanie Brooks, Johanna Loewenstein, Susannah Green, Leslie G Biesecker, Barbara B Biesecker. Eur J Hum Genet 2011
Flavia M Facio, Stephanie Brooks, Johanna Loewenstein, Susannah Green, Leslie G Biesecker, Barbara B Biesecker. Eur J Hum Genet 2011
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Population studies: return of research results and incidental findings Policy Statement.
Bartha Maria Knoppers, Mylène Deschênes, Ma'n H Zawati, Anne Marie Tassé. Eur J Hum Genet 2013
Bartha Maria Knoppers, Mylène Deschênes, Ma'n H Zawati, Anne Marie Tassé. Eur J Hum Genet 2013
9
Return of individual research results and incidental findings: facing the challenges of translational science.
Susan M Wolf. Annu Rev Genomics Hum Genet 2013
Susan M Wolf. Annu Rev Genomics Hum Genet 2013
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Return of results: ethical and legal distinctions between research and clinical care.
Wylie Burke, Barbara J Evans, Gail P Jarvik. Am J Med Genet C Semin Med Genet 2014
Wylie Burke, Barbara J Evans, Gail P Jarvik. Am J Med Genet C Semin Med Genet 2014
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Return of genomic results to research participants: the floor, the ceiling, and the choices in between.
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,[...]. Am J Hum Genet 2014
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,[...]. Am J Hum Genet 2014
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Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research.
Anna Middleton, Katherine I Morley, Eugene Bragin, Helen V Firth, Matthew E Hurles, Caroline F Wright, Michael Parker. Eur J Hum Genet 2016
Anna Middleton, Katherine I Morley, Eugene Bragin, Helen V Firth, Matthew E Hurles, Caroline F Wright, Michael Parker. Eur J Hum Genet 2016
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Making a definitive diagnosis: successful clinical application of whole exome sequencing in a child with intractable inflammatory bowel disease.
Elizabeth A Worthey, Alan N Mayer, Grant D Syverson, Daniel Helbling, Benedetta B Bonacci, Brennan Decker, Jaime M Serpe, Trivikram Dasu, Michael R Tschannen, Regan L Veith,[...]. Genet Med 2011
Elizabeth A Worthey, Alan N Mayer, Grant D Syverson, Daniel Helbling, Benedetta B Bonacci, Brennan Decker, Jaime M Serpe, Trivikram Dasu, Michael R Tschannen, Regan L Veith,[...]. Genet Med 2011
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The return of individual research findings in paediatric genetic research.
Kristien Hens, Herman Nys, Jean-Jacques Cassiman, Kris Dierickx. J Med Ethics 2011
Kristien Hens, Herman Nys, Jean-Jacques Cassiman, Kris Dierickx. J Med Ethics 2011
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Undesirable implications of disclosing individual genetic results to research participants.
Leslie A Meltzer. Am J Bioeth 2006
Leslie A Meltzer. Am J Bioeth 2006
9
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