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A Participant-Centered Approach to Understanding Risks and Benefits of Participation in Research Informed by the Kidney Precision Medicine Project

Butler, Catherine R. ; Appelbaum, Paul S. ; Ascani, Heather ; Aulisio, Mark ; de Boer, Ian H. ; Dighe, Ashveena L. ; Himmelfarb, Jonathan ; Mehl, Karla ; Murugan, Raghavan ; Sedor, John R. ; Tuttle, Katherine R. ; Waikar, Sushrut S. ; Freeman, Michael ; Alexandrov, Theodore ; Anderton, Christopher R. ; Ardayfio, Joseph ; Arora, Tanima ; Balderes, Olivia ; Bansal, Shweta ; Barasch, Jonathan M. ; Blanc, Victoria M. ; Blank, Kristina N. ; Bomback, Andrew S. ; Brown, Keith D. ; Campbell, Taneisha ; Canetta, Pietro A. ; Cooperman, Leslie ; Crawford, Dana C. ; D’Agati, Vivette D. ; Daniel, Stephen ; Dowd, Frederick ; Dunn, Kenneth W. ; Eddy, Sean ; Elder, Michele M. ; Gaut, Joe P. ; Goltsev, Yury ; Gonzalez-Vicente, Agustin ; Hayashi, Lynda ; He, Oliver ; Hedayati, S. Susan ; Herlitz, Leal ; Hodgin, Jeffrey B. ; Hoofnagle, Andrew N. ; Hoover, Paul J. ; Iyengar, Ravi ; Jain, Sanjay ; Jolly, Stacey ; Kellum, John A. ; Kelly, Katherine J. ; Kermani, Asra ; Kiryluk, Krzysztof ; Kretzler, Matthias ; Lake, Blue B. ; Laszik, Zoltan G. ; Lee, Simon C. ; Lienczewski, Chrysta ; Mariani, Laura H. ; McClelland, Robyn L. ; McMahon, Gearoid M. ; Menez, Steven ; Menon, Rajasree ; Miller, Tyler ; Moe, Orson W. ; Oliver, George ; Otto, Edgar ; Palevsky, Paul M. ; Parikh, Chirag R. ; Parikh, Samir ; Park, Christopher ; Park, Harold ; Pinkeney, Roy ; Randhawa, Parmjeet ; Rennke, Helmut ; Rosenberg, Avi ; Roy, Neil ; Sambandam, Kamalanathan ; Sarwal, Minnie ; Saul, John ; Schaub, Jennifer ; Sealfon, Rachel ; Sharma, Kumar ; Shpigel, Anna ; Stutzke, Edith Christine ; Toto, Robert D. ; Troyanskaya, Olga ; Tublin, Mitchell ; Ugwuowo, Ugochukwu ; Vazquez, Miguel ; Venkatachalam, Manjeri ; Vijayan, Anitha ; Corona-Villalobos, Celia P. ; Wang, Nancy ; Wilcox, Adam ; Williams, Kayleen ; Williams, Mark ; Wilson, Francis P. ; Winfree, Seth ; Xiong, Yuguang ; Zhang, Kun ; Zhang, Guanshi

American journal of kidney diseases, 2022-07, Vol.80 (1), p.132-138 [Periódico revisado por pares]

United States: Elsevier Inc

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Título:
A Participant-Centered Approach to Understanding Risks and Benefits of Participation in Research Informed by the Kidney Precision Medicine Project
Autor: Butler, Catherine R. ; Appelbaum, Paul S. ; Ascani, Heather ; Aulisio, Mark ; de Boer, Ian H. ; Dighe, Ashveena L. ; Himmelfarb, Jonathan ; Mehl, Karla ; Murugan, Raghavan ; Sedor, John R. ; Tuttle, Katherine R. ; Waikar, Sushrut S. ; Freeman, Michael ; Alexandrov, Theodore ; Anderton, Christopher R. ; Ardayfio, Joseph ; Arora, Tanima ; Balderes, Olivia ; Bansal, Shweta ; Barasch, Jonathan M. ; Blanc, Victoria M. ; Blank, Kristina N. ; Bomback, Andrew S. ; Brown, Keith D. ; Campbell, Taneisha ; Canetta, Pietro A. ; Cooperman, Leslie ; Crawford, Dana C. ; D’Agati, Vivette D. ; Daniel, Stephen ; Dowd, Frederick ; Dunn, Kenneth W. ; Eddy, Sean ; Elder, Michele M. ; Gaut, Joe P. ; Goltsev, Yury ; Gonzalez-Vicente, Agustin ; Hayashi, Lynda ; He, Oliver ; Hedayati, S. Susan ; Herlitz, Leal ; Hodgin, Jeffrey B. ; Hoofnagle, Andrew N. ; Hoover, Paul J. ; Iyengar, Ravi ; Jain, Sanjay ; Jolly, Stacey ; Kellum, John A. ; Kelly, Katherine J. ; Kermani, Asra ; Kiryluk, Krzysztof ; Kretzler, Matthias ; Lake, Blue B. ; Laszik, Zoltan G. ; Lee, Simon C. ; Lienczewski, Chrysta ; Mariani, Laura H. ; McClelland, Robyn L. ; McMahon, Gearoid M. ; Menez, Steven ; Menon, Rajasree ; Miller, Tyler ; Moe, Orson W. ; Oliver, George ; Otto, Edgar ; Palevsky, Paul M. ; Parikh, Chirag R. ; Parikh, Samir ; Park, Christopher ; Park, Harold ; Pinkeney, Roy ; Randhawa, Parmjeet ; Rennke, Helmut ; Rosenberg, Avi ; Roy, Neil ; Sambandam, Kamalanathan ; Sarwal, Minnie ; Saul, John ; Schaub, Jennifer ; Sealfon, Rachel ; Sharma, Kumar ; Shpigel, Anna ; Stutzke, Edith Christine ; Toto, Robert D. ; Troyanskaya, Olga ; Tublin, Mitchell ; Ugwuowo, Ugochukwu ; Vazquez, Miguel ; Venkatachalam, Manjeri ; Vijayan, Anitha ; Corona-Villalobos, Celia P. ; Wang, Nancy ; Wilcox, Adam ; Williams, Kayleen ; Williams, Mark ; Wilson, Francis P. ; Winfree, Seth ; Xiong, Yuguang ; Zhang, Kun ; Zhang, Guanshi
Assuntos: Altruism ; autonomy ; community engagement ; human subjects ; Humans ; Informed Consent ; institutional review boards ; Kidney ; kidney biopsy ; non-maleficence ; Precision Medicine ; research ethics ; research participation ; Research Personnel ; research risks and benefits ; Risk Assessment ; safety monitoring ; The Kidney Precision Medicine Project
É parte de: American journal of kidney diseases, 2022-07, Vol.80 (1), p.132-138
Notas: ObjectType-Article-1
SourceType-Scholarly Journals-1
ObjectType-Feature-2
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Kidney Precision Medicine Project Collaborators: Theodore Alexandrov (European Molecular Biology Laboratory), Charles E. Alpers (University of Washington), Christopher R. Anderton (Pacific Northwest National Laboratories), Paul S. Appelbaum (Columbia University), Joseph Ardayfio (Patient partner), Tanima Arora (Yale University), Heather Ascani (University of Michigan), Tarek M. El-Achkar (Indiana University), Mark Aulisio (Case Western Reserve), Evren U. Azeloglu Mount Sinai), Olivia Balderes (Columbia University), Ulysses GJ. Balis (University of Michigan), Shweta Bansal (UT Health San Antonio), Jonathan M. Barasch (Columbia University), Laura Barisoni (Duke University), Daria Barwinska (Indiana University), Jack Bebiak (Patient Partner), Victoria M. Blanc (University of Michigan), Kristina N. Blank (University of Washington), Andrew S. Bomback (Columbia University), Keith D. Brown (Patient Partner), William S. Bush (Case Western Reserve University), Taneisha Campbell (Patient Partner), Catherine E. Campbell (Patient Partner), Pietro A. Canetta (Columbia University), Jonas Carson (University of Washington), Leslie Cooperman (Cleveland Clinic), Dana C. Crawford (Case Western Reserve University), Vivette D. D’Agati (Columbia University), Pierre C. Dagher (Indiana University), Stephen Daniel (University of Washington), Ian H. De Boer (University of Washington), Ashveena L. Dighe (University of Washington), Frederick Dowd (University of Washington), Kenneth W. Dunn (Indiana University), Michael T. Eadon (Indiana University), Sean Eddy (University of Michigan), Michele M. Elder (University of Pittsburgh), Michael J. Ferkowicz (Indiana University), Joe P. Gaut (Washington University St. Louis), Yury Goltsev (Stanford University), Agustin Gonzalez-Vicente (Cleveland Clinic), Nir Hacohen (Broad Institute), Daniel E. Hall (University of Pittsburgh), Jens Hansen (Mount Sinai), Lynda Hayashi (Patient Partner), Oliver He (University of Michigan), Cijang He (Mount Sinai), S. Susan Hedayati (UT Southwestern), Leal Herlitz (Cleveland Clinic), Jonathan Himmelfarb (University of Washington), Jeffrey B. Hodgin (University of Michigan), Andrew N. Hoofnagle (University of Washington), Paul J. Hoover (Broad Institute), Ravi Iyengar (Mount Sinai), Sanjay Jain (Washington University St. Louis), Nichole Jefferson (Patient Partner), Stacey Jolly (Cleveland Clinic), John A. Kellum (University of Pittsburgh), Katherine J. Kelly (Indiana University), Asra Kermani (UT Southwestern), Krzysztof Kiryluk (Columbia University), Richard Knight (American Association of Kidney Patients), Robert Koewler (Patient Partner), Matthias Kretzler (University of Michigan), Blue B. Lake (UC San Diego), Zoltan G. Laszik (UC San Francisco), Stewart H. Lecker (Beth Israel Deaconess), Simon C. Lee (UT Southwestern), Chrysta Lienczewski (University of Michigan), Christopher Y. Lu (UT Southwestern), Laura H. Mariani (University of Michigan), Robyn L. McClelland (University of Washington), Gearoid M. McMahon (Brigham & Women’s Hospital), Karla Mehl (Columbia University), Steven Menez (Johns Hopkins University), Rajasree Menon (University of Michigan), Tyler Miller (UT Southwestern), Orson W. Moe (UT Southwestern), Dennis Moledina (Yale University), Sean D. Mooney (University of Washington), Raghavan Murugan (University of Pittsburgh), Jane Nguyen (Cleveland Clinic), Garry Nolan (UC San Francisco), John O’toole (Cleveland Clinic), George (Holt) Oliver (Parkland), Edgar Otto (University of Michigan), Paul M. Palevsky (University of Pittsburgh), Ellen Palmer (Cleveland Clinic), Annapurna Pamreddy (UT Health San Antonio), Chirag R. Parikh (Johns Hopkins University), Samir Parikh (Ohio State University), Christopher Park (University of Washington), Harold Park (UT Southwestern), Ljiljana Pasa-Tolic (Pacific Northwest National Laboratories), Roy Pinkeney (Patient Partner), Emilio Poggio (Cleveland Clinic), Parmjeet Randhawa (University of Pittsburgh), Helmut Rennke (Harvard University), Glenda V. Roberts (Patient Partner), Sylvia E. Rosas (Joslin Diabetes Center), Avi Rosenberg (Johns Hopkins University), Matthew Rosengart (University of Pittsburgh), Brad Rovin (Ohio State University), Neil Roy (Joslin Diabetes Center), Kamalanathan Sambandam (UT Southwestern), Minnie Sarwal (UCSF), John Saul (Patient Partner), Jennifer Schaub (University of Michigan), Rachel Sealfon (Princeton University), John Sedor (Cleveland Clinic), Ning (Sunny) Shang Columbia University), Stuart Shankland University of Washington), Kumar Sharma (UT Health San Antonio), Anna Shpigel (Patient Partner), Tara Sigdel (University of California, San Francisco), Becky Steck (University of Michigan), Isaac Stillman (Beth Israel Deaconess), Edith Christine Stutzke (Patient Partner), Timothy A. Sutton (Indiana University), Jose Torrealba (UT Southwestern), Robert D. Toto (UT Southwestern), Olga Troyanskaya (Princeton University), Mitchell Tublin (University of Pittsburgh), Katherine R. Tuttle (Providence Health), Ugochukwu Ugwuowo (Yale University), Miguel Vazquez (UT Southwestern), Dusan Velickovic (Pacific Northwest National Laboratories), Manjeri Venkatachalam (UT Health San Antonio), Anitha Vijayan (Washington University St. Louis), Celia P. Corona-Villalobos (Johns Hopkins University), Sushrut Waikar (Brigham & Women’s Hospital), Nancy Wang (UT Southwestern), Astrid Weins (Brigham & Women’s Hospital), Adam Wilcox (University of Washington), Kayleen Williams (University of Washington), Mark Williams (Joslin Diabetes Center), Francis P. Wilson (Yale University), Seth Winfree (Indiana University), Yuguang Xiong (Mount Sinai), Kun Zhang (UC San Diego), and Guanshi Zhang (UT Health San Antonio).
Descrição: An understanding of the ethical underpinnings of human subjects research that involves some risk to participants without anticipated direct clinical benefit—such as the kidney biopsy procedure as part of the Kidney Precision Medicine Project (KPMP)—requires a critical examination of the risks as well as the diverse set of countervailing potential benefits to participants. This kind of deliberation has been foundational to the development and conduct of the KPMP. Herein, we use illustrative features of this research paradigm to develop a more comprehensive conceptualization of the types of benefits that may be important to research participants, including respecting pluralistic values, supporting the opportunity to act altruistically, and enhancing benefits to a participant’s community. This approach may serve as a model to help researchers, ethicists, and regulators to identify opportunities to better respect and support participants in future research that entails some risk to these participants as well as to improve the quality of research for people with kidney disease.
Editor: United States: Elsevier Inc
Idioma: Inglês

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A Participant-Centered Approach to Understanding Risks and Benefits of Participation in Research Informed by the Kidney Precision Medicine Project

United States: Elsevier Inc

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