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  1. Article ; Online: Generative-AI-Generated Challenges for Health Data Research.

    Spector-Bagdady, Kayte

    The American journal of bioethics : AJOB

    2023  Volume 23, Issue 10, Page(s) 1–5

    MeSH term(s) Humans ; Bioethics
    Language English
    Publishing date 2023-10-09
    Publishing country United States
    Document type Journal Article ; Comment
    ZDB-ID 2060433-6
    ISSN 1536-0075 ; 1526-5161
    ISSN (online) 1536-0075
    ISSN 1526-5161
    DOI 10.1080/15265161.2023.2252311
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    Zs.A 6814: Show issues Location:
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  2. Article ; Online: "Consent Does Not Scale": Laying Out the Tensions in Balancing Patient Autonomy with Public Benefit in Commercializing Biospecimens.

    Spector-Bagdady, Kayte

    The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics

    2023  Volume 51, Issue 2, Page(s) 437–439

    MeSH term(s) Informed Consent/legislation & jurisprudence ; Personal Autonomy ; Specimen Handling ; Humans
    Language English
    Publishing date 2023-09-01
    Publishing country England
    Document type Journal Article ; Review ; Research Support, N.I.H., Extramural
    ZDB-ID 1168812-9
    ISSN 1748-720X ; 1073-1105 ; 0277-8459
    ISSN (online) 1748-720X
    ISSN 1073-1105 ; 0277-8459
    DOI 10.1017/jme.2023.74
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article ; Online: Translating Commercial Health Data Privacy Ethics into Change.

    Spector-Bagdady, Kayte / Price, W Nicholson

    The American journal of bioethics : AJOB

    2023  Volume 23, Issue 11, Page(s) 7–10

    MeSH term(s) Humans ; Privacy ; Confidentiality ; Informed Consent
    Language English
    Publishing date 2023-10-25
    Publishing country United States
    Document type Journal Article ; Comment
    ZDB-ID 2060433-6
    ISSN 1536-0075 ; 1526-5161
    ISSN (online) 1536-0075
    ISSN 1526-5161
    DOI 10.1080/15265161.2023.2263286
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article: Governing secondary research use of health data and specimens: the inequitable distribution of regulatory burden between federally funded and industry research.

    Spector-Bagdady, Kayte

    Journal of law and the biosciences

    2021  Volume 8, Issue 1, Page(s) lsab008

    Abstract: Some of the most promising recent advances in health research offer opportunities to improve diagnosis and therapy for millions of patients. They also require access to massive collections of health data and specimens. This need has generated an ... ...

    Abstract Some of the most promising recent advances in health research offer opportunities to improve diagnosis and therapy for millions of patients. They also require access to massive collections of health data and specimens. This need has generated an aggressive and lucrative push toward amassing troves of human data and biospecimens within academia and private industry. But the differences between the strict regulations that govern federally funded researchers in academic medical centers (AMCs) versus those that apply to the collection of health data and specimens by industry can entrench disparities. This article will discuss the value of secondary research with data and specimens and analyze why AMCs have been put at a disadvantage as compared to industry in amassing the large datasets that enable this work. It will explore the limitations of this current governance structure and propose that, moving forward, AMCs should set their own standards for commercialization of the data and specimens they generate in-house, the ability of their researchers to use industry data for their own work, and baseline informed consent standards for their own patients in order to ensure future data accessibility.
    Language English
    Publishing date 2021-05-20
    Publishing country England
    Document type Journal Article
    ZDB-ID 2756090-9
    ISSN 2053-9711
    ISSN 2053-9711
    DOI 10.1093/jlb/lsab008
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  5. Article ; Online: Hospitals should act now to notify patients about research use of their data and biospecimens.

    Spector-Bagdady, Kayte

    Nature medicine

    2020  Volume 26, Issue 3, Page(s) 306–308

    MeSH term(s) Biological Specimen Banks ; Biomedical Research ; Databases as Topic ; Health Insurance Portability and Accountability Act ; Hospitals ; Humans ; United States
    Language English
    Publishing date 2020-03-10
    Publishing country United States
    Document type Journal Article ; Research Support, N.I.H., Extramural
    ZDB-ID 1220066-9
    ISSN 1546-170X ; 1078-8956
    ISSN (online) 1546-170X
    ISSN 1078-8956
    DOI 10.1038/s41591-020-0795-6
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  6. Article ; Online: Serious news communication between clinicians and parents impacts parents' experiences, decision-making, and clinical care for critically ill neonates.

    Kukora, Stephanie / Krenz, Chris / De Vries, Raymond / Spector-Bagdady, Kayte

    Acta paediatrica (Oslo, Norway : 1992)

    2023  Volume 113, Issue 3, Page(s) 449–452

    MeSH term(s) Infant, Newborn ; Humans ; Critical Illness/therapy ; Parents ; Communication ; Decision Making ; Qualitative Research ; Professional-Family Relations
    Language English
    Publishing date 2023-12-29
    Publishing country Norway
    Document type Journal Article
    ZDB-ID 203487-6
    ISSN 1651-2227 ; 0365-1436 ; 0803-5253
    ISSN (online) 1651-2227
    ISSN 0365-1436 ; 0803-5253
    DOI 10.1111/apa.17084
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  7. Article ; Online: Protecting the Privacy of Reproductive Health Information After the Fall of Roe v Wade.

    Spector-Bagdady, Kayte / Mello, Michelle M

    JAMA health forum

    2022  Volume 3, Issue 6, Page(s) e222656

    MeSH term(s) Abortion, Legal ; Female ; Humans ; Pregnancy ; Privacy ; Reproductive Health ; Supreme Court Decisions
    Language English
    Publishing date 2022-06-03
    Publishing country United States
    Document type Journal Article
    ISSN 2689-0186
    ISSN (online) 2689-0186
    DOI 10.1001/jamahealthforum.2022.2656
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  8. Article ; Online: Rethinking the Importance of the Individual within a Community of Data.

    Spector-Bagdady, Kayte / Beever, Jonathan

    The Hastings Center report

    2020  Volume 50, Issue 4, Page(s) 9–11

    Abstract: The Covid-19 crisis has underscored the importance of the collection and analysis of clinical and research data and specimens for ongoing work. The federal government recently completed a related revision of the human subjects research regulations, ... ...

    Abstract The Covid-19 crisis has underscored the importance of the collection and analysis of clinical and research data and specimens for ongoing work. The federal government recently completed a related revision of the human subjects research regulations, founded in the traditional principles of research ethics, but in this commentary, we argue that the analysis underpinning this revision overemphasized the importance of informed consent, given the low risks of secondary research. Governing the interests of a community is different from governing the interests of individuals, and here we suggest that, moving forward, the analyses of the risks of secondary research protocols be assessed from the perspective of the former.
    MeSH term(s) Biomedical Research/ethics ; COVID-19 ; Ethics Committees, Research ; Federal Government ; Government Regulation ; Human Experimentation/ethics ; Humans ; Informed Consent/ethics ; Policy Making ; Research Design ; Research Subjects
    Keywords covid19
    Language English
    Publishing date 2020-07-07
    Publishing country United States
    Document type Journal Article ; Research Support, N.I.H., Extramural
    ZDB-ID 194940-8
    ISSN 1552-146X ; 0093-0334
    ISSN (online) 1552-146X
    ISSN 0093-0334
    DOI 10.1002/hast.1112
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  9. Article ; Online: Promoting Ethical Deployment of Artificial Intelligence and Machine Learning in Healthcare.

    Spector-Bagdady, Kayte / Rahimzadeh, Vasiliki / Jaffe, Kaitlyn / Moreno, Jonathan

    The American journal of bioethics : AJOB

    2022  Volume 22, Issue 5, Page(s) 4–7

    MeSH term(s) Artificial Intelligence ; Delivery of Health Care ; Ethics, Research ; Health Facilities ; Humans ; Machine Learning
    Language English
    Publishing date 2022-04-13
    Publishing country United States
    Document type Journal Article ; Research Support, N.I.H., Extramural ; Comment
    ZDB-ID 2060433-6
    ISSN 1536-0075 ; 1526-5161
    ISSN (online) 1536-0075
    ISSN 1526-5161
    DOI 10.1080/15265161.2022.2059206
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  10. Article ; Online: Should Clinicians Leave "Expanded" Carrier Screening Decisions to Patients?

    Fakih, Amanda / Spector-Bagdady, Kayte

    AMA journal of ethics

    2019  Volume 21, Issue 10, Page(s) E858–864

    Abstract: Many patients choose to undergo some type of carrier screening when pregnant or planning to become pregnant. "Expanded" carrier screening products test all patients for the same conditions, regardless of family history, race, or ethnicity. Proponents of ... ...

    Abstract Many patients choose to undergo some type of carrier screening when pregnant or planning to become pregnant. "Expanded" carrier screening products test all patients for the same conditions, regardless of family history, race, or ethnicity. Proponents of expanded screening argue that testing everyone for everything can identify more couples at risk of having an affected fetus. However, most conditions on expanded carrier screening panels do not adhere to criteria recommended by professional organizations and can leave patients with a positive test result but little helpful information about actual clinical risk for their future baby. Confusion persists about whether clinicians should leave carrier screening decisions to patients.
    MeSH term(s) Decision Making ; Female ; Genetic Carrier Screening/ethics ; Genetic Carrier Screening/methods ; Humans ; Male ; Pregnancy ; Prenatal Diagnosis/ethics ; Prenatal Diagnosis/methods ; Risk Assessment
    Language English
    Publishing date 2019-10-01
    Publishing country United States
    Document type Journal Article ; Research Support, N.I.H., Extramural ; Research Support, Non-U.S. Gov't
    ISSN 2376-6980
    ISSN (online) 2376-6980
    DOI 10.1001/amajethics.2019.858
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