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Benjamin E. Berkman [19]Benjamin Berkman [2]Ben Berkman [1]
  1.  45
    Broad Consent for Research With Biological Samples: Workshop Conclusions.Christine Grady, Lisa Eckstein, Ben Berkman, Dan Brock, Robert Cook-Deegan, Stephanie M. Fullerton, Hank Greely, Mats G. Hansson, Sara Hull, Scott Kim, Bernie Lo, Rebecca Pentz, Laura Rodriguez, Carol Weil, Benjamin S. Wilfond & David Wendler - 2015 - American Journal of Bioethics 15 (9):34-42.
    Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the (...)
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  2.  26
    Do Researchers Have an Obligation to Actively Look for Genetic Incidental Findings?Catherine Gliwa & Benjamin E. Berkman - 2013 - American Journal of Bioethics 13 (2):32-42.
    The rapid growth of next-generation genetic sequencing has prompted debate about the responsibilities of researchers toward genetic incidental findings. Assuming there is a duty to disclose significant incidental findings, might there be an obligation for researchers to actively look for these findings? We present an ethical framework for analyzing whether there is a positive duty to look for genetic incidental findings. Using the ancillary care framework as a guide, we identify three main criteria that must be present to give rise (...)
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  3.  31
    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 - 2012 - American Journal of Bioethics 12 (10):1-8.
    Whole-genome analysis and whole-exome analysis generate many more clinically actionable findings than traditional targeted genetic analysis. These findings may be relevant to research participants themselves as well as for members of their families. Though researchers performing genomic analyses are likely to find medically significant genetic variations for nearly every research participant, what they will find for any given participant is unpredictable. The ubiquity and diversity of these findings complicate questions about disclosing individual genetic test results. We outline an approach for (...)
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  4.  8
    The Ethics of Allocating Uterine Transplants.Michelle J. Bayefsky & Benjamin E. Berkman - 2016 - Cambridge Quarterly of Healthcare Ethics 25 (3):350-365.
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  5.  20
    A Framework for Analyzing the Ethics of Disclosing Genetic Research Findings.Lisa Eckstein, Jeremy R. Garrett & Benjamin E. Berkman - 2014 - Journal of Law, Medicine and Ethics 42 (2):190-207.
    Over the past decade, there has been an extensive debate about whether researchers have an obligation to disclose genetic research findings, including primary and secondary findings. There appears to be an emerging (but disputed) view that researchers have some obligation to disclose some genetic findings to some research participants. The contours of this obligation, however, remain unclear. -/- As this paper will explore, much of this confusion is definitional or conceptual in nature. The extent of a researcher’s obligation to return (...)
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  6.  44
    What Does the Duty to Warn Require?Seema K. Shah, Sara Chandros Hull, Michael A. Spinner, Benjamin E. Berkman, Lauren A. Sanchez, Ruquyyah Abdul-Karim, Amy P. Hsu, Reginald Claypool & Steven M. Holland - 2013 - American Journal of Bioethics 13 (10):62 - 63.
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  7.  16
    Prenatal Whole Genome Sequencing.Greer Donley, Sara Chandros Hull & Benjamin E. Berkman - 2012 - Hastings Center Report 42 (4):28-40.
  8.  3
    Re-Examining the Ethics of Genetic Counselling in the Genomic Era.Will Schupmann, Leila Jamal & Benjamin E. Berkman - 2020 - Journal of Bioethical Inquiry 17 (3):325-335.
    Respect for patient autonomy has served as the dominant ethical principle of genetic counselling, but as we move into a genomic era, it is time to actively re-examine the role that this principle plays in genetic counselling practice. In this paper, we argue that the field of genetic counselling should move away from its emphasis on patient autonomy and toward the incorporation of a more balanced set of principles that allows counsellors to offer clear guidance about how best to obtain (...)
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  9.  22
    The “Right Not to Know” in the Genomic Era: Time to Break From Tradition?Benjamin E. Berkman & Sara Chandros Hull - 2014 - American Journal of Bioethics 14 (3):28-31.
  10. When Should Genome Researchers Disclose Misattributed Pahentage?Amulya Mandava, Joseph Millum & Benjamin E. Berkman - 2015 - Hastings Center Report 45 (4):28-36.
    Research studies increasingly use genomic sequencing to draw inferences based on comparisons between the genetic data of a set of purportedly related individuals. As use of this method progresses, it will become much more common to discover that the assumed biological relationships between the individuals are mistaken. Consequently, researchers will have to grapple with decisions about whether to return incidental findings of misattributed parentage on a much larger scale than ever before. In this paper we provide an extended argument for (...)
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  11.  5
    Commentary on ‘The Right Not to Know and the Obligation Not to Know’.Benjamin Berkman - 2020 - Journal of Medical Ethics 46 (5):304-305.
    The idea of a right not to know emerged in the late 20th century, largely in response to the early incorporation of genetic testing into clinical care. While a few commentators took a more absolute view about the strength of the RNTK, most of the scholarship was openly sceptical of the concept, or at least was willing to acknowledge that the RNTK was defeasible.1 After two decades of relative quiet, it was surprising, then, that the RNTK reappeared with a seemingly (...)
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  12.  20
    Scrutinizing the Right Not to Know.Benjamin E. Berkman, Sara Chandros Hull & Leslie G. Biesecker - 2015 - American Journal of Bioethics 15 (7):17-19.
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  13.  12
    When Does an Illness Begin: Genetic Discrimination and Disease Manifestation.Anya E. R. Prince & Benjamin E. Berkman - 2012 - Journal of Law, Medicine and Ethics 40 (3):655-664.
    Congress passed the Genetic Information Nondiscrimination Act of 2008 in order to remove a perceived barrier to clinical genetic testing. By banning health insurance companies and employers from discriminating against an individual based on his or her genetic information, legislators hoped that patients would be encouraged to seek genetic testing that could improve health outcomes and provide opportunities for preventive measures. Their explicit legislative goal was to fully protect the public from discrimination and allay their concerns about the potential for (...)
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  14.  31
    Teaching Health Law: Teaching Law Students to Be Policymakers: The Health and Science Policy Workshop on Genomic Research.Benjamin E. Berkman & Karen H. Rothenberg - 2012 - Journal of Law, Medicine and Ethics 40 (1):147-153.
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  15.  2
    Implementing Expanded Prenatal Genetic Testing: Should Parents Have Access to Any and All Fetal Genetic Information?Michelle J. Bayefsky & Benjamin E. Berkman - forthcoming - American Journal of Bioethics:1-26.
    Prenatal genetic testing is becoming available for an increasingly broad set of diseases, and it is only a matter of time before parents can choose to test for hundreds, if not thousands, of geneti...
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  16.  6
    Should Patient Groups Have the Power to Redirect How Their Samples Are Used?Eleanor T. Chung & Benjamin E. Berkman - 2019 - American Journal of Bioethics 19 (8):26-28.
    Volume 19, Issue 8, August 2019, Page 26-28.
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  17.  9
    Response to Open Peer Commentaries on “Do Researchers Have an Obligation to Actively Look for Genetic Incidental Findings?”.Catherine Gliwa & Benjamin E. Berkman - 2013 - American Journal of Bioethics 13 (5):W10 - W11.
  18.  1
    A New Ethical Framework for Assessing the Unique Challenges of Fetal Therapy Trials.Saskia Hendriks, Christine Grady, David Wasserman, David Wendler, Diana W. Bianchi & Benjamin E. Berkman - forthcoming - American Journal of Bioethics:1-25.
    New fetal therapies offer important prospects for improving health. However, having to consider both the fetus and the pregnant woman makes the risk–benefit analysis of fetal therapy trials challen...
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  19.  34
    Response to Open Peer Commentaries on “Genomic Inheritances: Disclosing Individual Research Results From Whole-Exome Sequencing to Deceased Participants' Relatives”.Sara Chandros Hull, Ben Chan, Leslie G. Biesecker & Benjamin E. Berkman - 2012 - American Journal of Bioethics 12 (12):W9-W10.
  20.  5
    Development of a Consensus Approach for Return of Pathology Incidental Findings in the Genotype-Tissue Expression (GTEx) Project.Nicole C. Lockhart, Carol J. Weil, Latarsha J. Carithers, Susan E. Koester, A. Roger Little, Simona Volpi, Helen M. Moore & Benjamin E. Berkman - 2018 - Journal of Medical Ethics 44 (9):643-645.
    The active debate about the return of incidental or secondary findings in research has primarily focused on return to research participants, or in some cases, family members. Particular attention has been paid to return of genomic findings. Yet, research may generate other types of findings that warrant consideration for return, including findings related to the pathology of donated biospecimens. In the case of deceased biospecimen donors who are also organ and/or tissue transplant donors, pathology incidental findings may be relevant not (...)
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  21.  29
    Allocation of Scarce Biospecimens for Use in Research.Leah Pierson, Sophia Gibert, Benjamin Berkman, Marion Danis & Joseph Millum - forthcoming - Journal of Medical Ethics:medethics-2019-105766.
    Hundreds of millions of rare biospecimens are stored in laboratories and biobanks around the world. Often, the researchers who possess these specimens do not plan to use them, while other researchers limit the scope of their work because they cannot acquire biospecimens that meet their needs. This situation raises an important and underexplored question: how should scientists allocate biospecimens that they do not intend to use? We argue that allocators should aim to maximise the social value of the research enterprise (...)
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