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Return of Value in the New Era of Biomedical Research—One Size Will Not Fit All

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Francis X. Shen, Matthew L. Baum, Nicole Martinez-Martin, Adam S. Miner, Melissa Abraham, Catherine A. Brownstein, Nathan Cortez, Barbara J. Evans, Laura T. Germine, David C. Glahn, Christine Grady, Ingrid A. Holm, Elisa A. Hurley, Sara Kimble, Gabriel Lázaro-Muñoz, Kimberlyn Leary, Mason Marks, Patrick J. Monette, Jukka-Pekka Onnela, P. Pearl O’Rourke, Scott L. Rauch, Carmel Shachar, Srijan Sen, Ipsit Vahia, Jason L. Vassy, Justin T. Baker, Barbara E. Bierer & Benjamin C. Silverman. (2023) Returning Individual Research Results from Digital Phenotyping in Psychiatry. The American Journal of Bioethics 0:0, pages 1-22.
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Tamara G R Macieira, Yingwei Yao & Gail M Keenan. (2021) Use of machine learning to transform complex standardized nursing care plan data into meaningful research variables: a palliative care exemplar. Journal of the American Medical Informatics Association 28:12, pages 2695-2701.
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Danya F. Vears, Joel T. Minion, Stephanie J. Roberts, James Cummings, Mavis Machirori, Mwenza Blell, Isabelle Budin-Ljøsne, Lorraine Cowley, Stephanie O. M. Dyke, Clara Gaff, Robert Green, Alison Hall, Amber L. Johns, Bartha M. Knoppers, Stephanie Mulrine, Christine Patch, Eva Winkler & Madeleine J. Murtagh. (2021) Return of individual research results from genomic research: A systematic review of stakeholder perspectives. PLOS ONE 16:11, pages e0258646.
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Casey Overby Taylor, Natalie Flaks Manov, Katherine D. Crew, Chunhua Weng, John J. Connolly, Christopher G. Chute, Daniel E. Ford, Harold Lehmann, Alanna Kulchak Rahm, Iftikhar J. Kullo, Pedro J. Caraballo, Ingrid A. Holm & Debra Mathews. (2021) Preferences for Updates on General Research Results: A Survey of Participants in Genomic Research from Two Institutions. Journal of Personalized Medicine 11:5, pages 399.
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Ludmila N. Bakhireva, Camille Nebeker, Pilar Ossorio, Jyoti Angal, Moriah E. Thomason & Julie M. Croff. (2020) Inclusion of American Indians and Alaskan Natives in Large National Studies: Ethical Considerations and Implications for Biospecimen Collection in the HEALthy Brain and Child Development Study. Adversity and Resilience Science 1:4, pages 285-294.
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Camille Nebeker. (2021) mHealth Research Applied to Regulated and Unregulated Behavioral Health Sciences. Journal of Law, Medicine & Ethics 48:S1, pages 49-59.
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Shengzhi Wang, Ellen E. Lee, Benjamin Zywicki, Ho-Cheol Kim, Dilip Jeste & Camille Nebeker. 2020. Advances in the Human Side of Service Engineering. Advances in the Human Side of Service Engineering 138 145 .
Camille Nebeker, Alex D. Leow & Raeanne C. Moore. (2019) From Return of Information to Return of Value: Ethical Considerations when Sharing Individual-Level Research Data. Journal of Alzheimer's Disease 71:4, pages 1081-1088.
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