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AJOB Empirical Bioethics Volume 10, 2019 - Issue 1
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Articles

Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences

Deborah R. GordonDepartment of Anthropology, History and Social Medicine, University of California, San Francisco; View further author information
,
Carmen Radecki BreitkopfDepartment of Health Sciences Research, Mayo Clinic; View further author information
,
Marguerite RobinsonBiomedical Ethics Research, Mayo Clinic; View further author information
,
Wesley O. PetersenOffice of Health Disparities Research, Mayo Clinic; View further author information
,
Jason S. EggintonCenter for the Science of Health Care Delivery, Mayo Clinic; View further author information
,
Kari G. ChaffeeDepartment of Health Sciences Research, Mayo Clinic; View further author information
,
Gloria M. PetersenDepartment of Health Sciences Research, Mayo Clinic; View further author information
,
Susan M. WolfUniversity of Minnesota Law School; View further author information
&
Barbara A. KoenigProgram in Bioethics, University of California, San FranciscoCorrespondence[email protected]
View further author information
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Pages 1-22 | Published online: 31 Dec 2018

Citations (9)

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Read on this site (1)

Deborah R. Gordon & Barbara A. Koenig. (2022) “If relatives inherited the gene, they should inherit the data.” Bringing the family into the room where bioethics happens. New Genetics and Society 41:1, pages 23-46.
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Articles from other publishers (8)

Nathan R. Wall, Ryan N. Fuller, Ann Morcos & Marino De Leon. (2023) Pancreatic Cancer Health Disparity: Pharmacologic Anthropology. Cancers 15:20, pages 5070.
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Susan M. WolfRobert C. Green. (2023) Return of Results in Genomic Research Using Large-Scale or Whole Genome Sequencing: Toward a New Normal. Annual Review of Genomics and Human Genetics 24:1, pages 393-414.
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Hongxiang Gao, Baige Cao, Nan Dang, Song Gu, Min Xu, Bin Ji, Yiqi Shi, Shijian Liu & Congrong Wang. (2022) Comparison of factors influencing the willingness to donate biospecimens among guardians of children with cancer and adult cancer patients. Cancer Medicine 11:6, pages 1524-1534.
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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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Danya F Vears, Joel T Minion, Stephanie J Roberts, James Cummings, Mavis Machirori & Madeleine J Murtagh. (2021) Views on genomic research result delivery methods and informed consent: a review. Personalized Medicine 18:3, pages 295-310.
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Latifa Adarmouch, Marwan Felaefel, Robert Wachbroit & Henry Silverman. (2020) Perspectives regarding privacy in clinical research among research professionals from the Arab region: an exploratory qualitative study. BMC Medical Ethics 21:1.
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Signe Mezinska, Jekaterina Kaleja & Ilze Mileiko. (2020) Becoming and being a biobank donor: The role of relationships and ethics. PLOS ONE 15:11, pages e0242828.
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Xuan Zhu, Susanna N. Basappa, Jennifer L. Ridgeway, Monica L. Albertie, Elizabeth Pantoja, Darin Prescott & Carmen Radecki Breitkopf. (2020) Perspectives regarding family disclosure of genetic research results in three racial and ethnic minority populations. Journal of Community Genetics 11:4, pages 433-443.
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