Bartha Maria Knoppers, Mylène Deschênes, Ma'n H Zawati, Anne Marie Tassé. Eur J Hum Genet 2013
Times Cited: 72
Times Cited: 72
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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
54
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
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
48
Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group.
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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
38
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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Return of genomic results to research participants: the floor, the ceiling, and the choices in between.
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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
29
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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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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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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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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Anticipate and communicate: Ethical management of incidental and secondary findings in the clinical, research, and direct-to-consumer contexts (December 2013 report of the Presidential Commission for the Study of Bioethical Issues).
Christine Weiner. Am J Epidemiol 2014
Christine Weiner. Am J Epidemiol 2014
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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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International normative perspectives on the return of individual research results and incidental findings in genomic biobanks.
Ma'n H Zawati, Bartha Maria Knoppers. Genet Med 2012
Ma'n H Zawati, Bartha Maria Knoppers. Genet Med 2012
26
Communication of biobanks' research results: what do (potential) participants want?
Tineke M Meulenkamp, Sjef K Gevers, Jasper A Bovenberg, Gerard H Koppelman, Astrid van Hylckama Vlieg, Ellen M A Smets. Am J Med Genet A 2010
Tineke M Meulenkamp, Sjef K Gevers, Jasper A Bovenberg, Gerard H Koppelman, Astrid van Hylckama Vlieg, Ellen M A Smets. Am J Med Genet A 2010
17
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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Return of whole-genome sequencing results in paediatric research: a statement of the P3G international paediatrics platform.
Bartha Maria Knoppers, Denise Avard, Karine Sénécal, Ma'n H Zawati. Eur J Hum Genet 2014
Bartha Maria Knoppers, Denise Avard, Karine Sénécal, Ma'n H Zawati. Eur J Hum Genet 2014
22
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
12
Researchers' views on return of incidental genomic research results: qualitative and quantitative findings.
Robert Klitzman, Paul S Appelbaum, Abby Fyer, Josue Martinez, Brigitte Buquez, Julia Wynn, Cameron R Waldman, Jo Phelan, Erik Parens, Wendy K Chung. Genet Med 2013
Robert Klitzman, Paul S Appelbaum, Abby Fyer, Josue Martinez, Brigitte Buquez, Julia Wynn, Cameron R Waldman, Jo Phelan, Erik Parens, Wendy K Chung. Genet Med 2013
12
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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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
11
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
11
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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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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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
11
Do researchers have an obligation to actively look for genetic incidental findings?
Catherine Gliwa, Benjamin E Berkman. Am J Bioeth 2013
Catherine Gliwa, Benjamin E Berkman. Am J Bioeth 2013
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Return of research results from genomic biobanks: cost matters.
Marianna J Bledsoe, Ellen Wright Clayton, Amy L McGuire, William E Grizzle, P Pearl O'Rourke, Nikolajs Zeps. Genet Med 2013
Marianna J Bledsoe, Ellen Wright Clayton, Amy L McGuire, William E Grizzle, P Pearl O'Rourke, Nikolajs Zeps. Genet Med 2013
19
Point-counterpoint. Patient autonomy and incidental findings in clinical genomics.
Susan M Wolf, George J Annas, Sherman Elias. Science 2013
Susan M Wolf, George J Annas, Sherman Elias. Science 2013
11
Actionable, pathogenic incidental findings in 1,000 participants' exomes.
Michael O Dorschner, Laura M Amendola, Emily H Turner, Peggy D Robertson, Brian H Shirts, Carlos J Gallego, Robin L Bennett, Kelly L Jones, Mari J Tokita, James T Bennett,[...]. Am J Hum Genet 2013
Michael O Dorschner, Laura M Amendola, Emily H Turner, Peggy D Robertson, Brian H Shirts, Carlos J Gallego, Robin L Bennett, Kelly L Jones, Mari J Tokita, James T Bennett,[...]. Am J Hum Genet 2013
11
Attitudes of genetics professionals toward the return of incidental results from exome and whole-genome sequencing.
Joon-Ho Yu, Tanya M Harrell, Seema M Jamal, Holly K Tabor, Michael J Bamshad. Am J Hum Genet 2014
Joon-Ho Yu, Tanya M Harrell, Seema M Jamal, Holly K Tabor, Michael J Bamshad. Am J Hum Genet 2014
11
Recommendations for reporting of secondary findings in clinical exome and genome sequencing, 2016 update (ACMG SF v2.0): a policy statement of the American College of Medical Genetics and Genomics.
Sarah S Kalia, Kathy Adelman, Sherri J Bale, Wendy K Chung, Christine Eng, James P Evans, Gail E Herman, Sophia B Hufnagel, Teri E Klein, Bruce R Korf,[...]. Genet Med 2017
Sarah S Kalia, Kathy Adelman, Sherri J Bale, Wendy K Chung, Christine Eng, James P Evans, Gail E Herman, Sophia B Hufnagel, Teri E Klein, Bruce R Korf,[...]. Genet Med 2017
11
Developing a policy for paediatric biobanks: principles for good practice.
Kristien Hens, Carla E Van El, Pascal Borry, Anne Cambon-Thomsen, Martina C Cornel, Francesca Forzano, Anneke Lucassen, Christine Patch, Lisbeth Tranebjaerg, Eric Vermeulen,[...]. Eur J Hum Genet 2013
Kristien Hens, Carla E Van El, Pascal Borry, Anne Cambon-Thomsen, Martina C Cornel, Francesca Forzano, Anneke Lucassen, Christine Patch, Lisbeth Tranebjaerg, Eric Vermeulen,[...]. Eur J Hum Genet 2013
15
"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
9
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
9
Feedback of individual genetic results to research participants: in favor of a qualified disclosure policy.
Annelien L Bredenoord, N Charlotte Onland-Moret, Johannes J M Van Delden. Hum Mutat 2011
Annelien L Bredenoord, N Charlotte Onland-Moret, Johannes J M Van Delden. Hum Mutat 2011
9
Practical implementation issues and challenges for biobanks in the return of individual research results.
Marianna J Bledsoe, William E Grizzle, Brian J Clark, Nikolajs Zeps. Genet Med 2012
Marianna J Bledsoe, William E Grizzle, Brian J Clark, Nikolajs Zeps. Genet Med 2012
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Self-guided management of exome and whole-genome sequencing results: changing the results return model.
Joon-Ho Yu, Seema M Jamal, Holly K Tabor, Michael J Bamshad. Genet Med 2013
Joon-Ho Yu, Seema M Jamal, Holly K Tabor, Michael J Bamshad. Genet Med 2013
12
Attitudes of Canadian researchers toward the return to participants of incidental and targeted genomic findings obtained in a pediatric research setting.
Conrad V Fernandez, Caron Strahlendorf, Denise Avard, Bartha M Knoppers, Colleen O'Connell, Eric Bouffet, David Malkin, Nada Jabado, Kym Boycott, Poul H Sorensen. Genet Med 2013
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20
Standards and guidelines for the interpretation of sequence variants: a joint consensus recommendation of the American College of Medical Genetics and Genomics and the Association for Molecular Pathology.
Sue Richards, Nazneen Aziz, Sherri Bale, David Bick, Soma Das, Julie Gastier-Foster, Wayne W Grody, Madhuri Hegde, Elaine Lyon, Elaine Spector,[...]. Genet Med 2015
Sue Richards, Nazneen Aziz, Sherri Bale, David Bick, Soma Das, Julie Gastier-Foster, Wayne W Grody, Madhuri Hegde, Elaine Lyon, Elaine Spector,[...]. Genet Med 2015
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Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.
Susan M Wolf, Rebecca Branum, Barbara A Koenig, Gloria M Petersen, Susan A Berry, Laura M Beskow, Mary B Daly, Conrad V Fernandez, Robert C Green, Bonnie S LeRoy,[...]. J Law Med Ethics 2015
Susan M Wolf, Rebecca Branum, Barbara A Koenig, Gloria M Petersen, Susan A Berry, Laura M Beskow, Mary B Daly, Conrad V Fernandez, Robert C Green, Bonnie S LeRoy,[...]. J Law Med Ethics 2015
12
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
9
Return of genetic testing results in the era of whole-genome sequencing.
Bartha Maria Knoppers, Ma'n H Zawati, Karine Sénécal. Nat Rev Genet 2015
Bartha Maria Knoppers, Ma'n H Zawati, Karine Sénécal. Nat Rev Genet 2015
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Prospective biorepository participants' perspectives on access to research results.
Laura M Beskow, Sondra J Smolek. J Empir Res Hum Res Ethics 2009
Laura M Beskow, Sondra J Smolek. J Empir Res Hum Res Ethics 2009
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A timely arrival for genomic medicine.
Alan N Mayer, David P Dimmock, Marjorie J Arca, David P Bick, James W Verbsky, Elizabeth A Worthey, Howard J Jacob, David A Margolis. Genet Med 2011
Alan N Mayer, David P Dimmock, Marjorie J Arca, David P Bick, James W Verbsky, Elizabeth A Worthey, Howard J Jacob, David A Margolis. Genet Med 2011
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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
David I Shalowitz, Franklin G Miller. JAMA 2005
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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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Duty to disclose what? Querying the putative obligation to return research results to participants.
F A Miller, R Christensen, M Giacomini, J S Robert. J Med Ethics 2008
F A Miller, R Christensen, M Giacomini, J S Robert. J Med Ethics 2008
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Return of individual research results from genome-wide association studies: experience of the Electronic Medical Records and Genomics (eMERGE) Network.
Stephanie M Fullerton, Wendy A Wolf, Kyle B Brothers, Ellen Wright Clayton, Dana C Crawford, Joshua C Denny, Philip Greenland, Barbara A Koenig, Kathleen A Leppig, Noralane M Lindor,[...]. Genet Med 2012
Stephanie M Fullerton, Wendy A Wolf, Kyle B Brothers, Ellen Wright Clayton, Dana C Crawford, Joshua C Denny, Philip Greenland, Barbara A Koenig, Kathleen A Leppig, Noralane M Lindor,[...]. Genet Med 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
Subjects matter: a survey of public opinions about a large genetic cohort study.
David Kaufman, Juli Murphy, Joan Scott, Kathy Hudson. Genet Med 2008
David Kaufman, Juli Murphy, Joan Scott, Kathy Hudson. Genet Med 2008
8
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