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  1. Article ; Online: What is "data sharing" and why should biomedical researchers embrace it?

    Bobrow, Martin

    Transplantation

    2015  Volume 99, Issue 4, Page(s) 654–655

    MeSH term(s) Access to Information ; Animals ; Biomedical Research ; Data Collection ; Databases, Factual ; Humans ; Information Dissemination ; Organ Transplantation
    Language English
    Publishing date 2015-04
    Publishing country United States
    Document type Comment ; Journal Article
    ZDB-ID 208424-7
    ISSN 1534-6080 ; 0041-1337
    ISSN (online) 1534-6080
    ISSN 0041-1337
    DOI 10.1097/TP.0000000000000714
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    Zs.MO 509: Show issues

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  2. Article ; Online: Funders must encourage scientists to share.

    Bobrow, Martin

    Nature

    2015  Volume 522, Issue 7555, Page(s) 129

    MeSH term(s) Datasets as Topic/supply & distribution ; Information Dissemination ; Research Personnel
    Language English
    Publishing date 2015-06-11
    Publishing country England
    Document type Journal Article
    ZDB-ID 120714-3
    ISSN 1476-4687 ; 0028-0836
    ISSN (online) 1476-4687
    ISSN 0028-0836
    DOI 10.1038/522129a
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article ; Online: Balancing privacy with public benefit.

    Bobrow, Martin

    Nature

    2013  Volume 500, Issue 7461, Page(s) 123

    MeSH term(s) Access to Information ; Base Sequence ; Confidentiality ; Databases, Factual/standards ; Humans ; Information Dissemination ; International Cooperation ; Research/economics ; Research/standards
    Language English
    Publishing date 2013-08-08
    Publishing country England
    Document type Journal Article
    ZDB-ID 120714-3
    ISSN 1476-4687 ; 0028-0836
    ISSN (online) 1476-4687
    ISSN 0028-0836
    DOI 10.1038/500123a
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  4. Article ; Online: Regulate research at the animal-human interface.

    Bobrow, Martin

    Nature

    2011  Volume 475, Issue 7357, Page(s) 448

    MeSH term(s) Animals ; Chimera ; Ethics, Research ; Government Regulation ; Humans ; United Kingdom
    Language English
    Publishing date 2011-07-22
    Publishing country England
    Document type Journal Article
    ZDB-ID 120714-3
    ISSN 1476-4687 ; 0028-0836
    ISSN (online) 1476-4687
    ISSN 0028-0836
    DOI 10.1038/475448a
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  5. Article ; Online: Victor McKusick and his role in the founding of the European School of Genetic Medicine.

    Romeo, Giovanni / Bobrow, Martin / Ferguson-Smith, Malcolm / Ballabio, Andrea

    American journal of medical genetics. Part A

    2021  Volume 185, Issue 11, Page(s) 3253–3258

    Abstract: Between 1988 and 2007, during the courses of the European School of Genetic Medicine, many of us had the opportunity to appreciate the tolerant and open-minded personality of Victor McKusick. He was gifted with a unique foresight for the innovations ... ...

    Abstract Between 1988 and 2007, during the courses of the European School of Genetic Medicine, many of us had the opportunity to appreciate the tolerant and open-minded personality of Victor McKusick. He was gifted with a unique foresight for the innovations introduced into medicine through the development of the Human Genome Project. The aim of our separate contributions in this article is to document how his insights had an important impact on the European medical training system.
    MeSH term(s) Europe ; Genetics, Medical/education ; Genetics, Medical/history ; History, 20th Century ; History, 21st Century ; Human Genome Project/history ; Humans
    Language English
    Publishing date 2021-09-08
    Publishing country United States
    Document type Biography ; Historical Article ; Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 2108614-X
    ISSN 1552-4833 ; 0148-7299 ; 1552-4825
    ISSN (online) 1552-4833
    ISSN 0148-7299 ; 1552-4825
    DOI 10.1002/ajmg.a.62481
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  6. Book ; Audio / Video: The patient's consent

    Bobrow, Martin

    2004  

    Institution Great Britain. / Department of Health.
    Singapore. / Bioethics Advisory Committee
    Author's details Martin Bobrow
    MeSH term(s) Human Experimentation ; Informed Consent ; Biomedical Research ; Coercion ; Ethics Committees, Research ; Genetic Privacy ; Genetic Research ; Mental Competency ; Research Subjects ; Risk Assessment
    Keywords Biomedical and Behavioral Research ; Health Care and Public Health ; Professional Patient Relationship
    Language English
    Publisher Bioethics Advisory Committee
    Publishing place Helios, Singapore
    Document type Book ; Audio / Video
    Note Title from caption on PDF document (viewed on September 18, 2006). ; "This article by Professor Martin Bobrow is based on his public lecture entitled "Informed consent - what does it mean?", organised by the Bioethics Advisory Committee on 19th February, 2004, at the Clinical Research Centre Auditorium, Singapore."
    Database Catalogue of the US National Library of Medicine (NLM)

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  7. Article ; Online: A decision tool to guide the ethics review of a challenging breed of emerging genomic projects.

    Joly, Yann / So, Derek / Osien, Gladys / Crimi, Laura / Bobrow, Martin / Chalmers, Don / Wallace, Susan E / Zeps, Nikolajs / Knoppers, Bartha

    European journal of human genetics : EJHG

    2016  Volume 24, Issue 8, Page(s) 1099–1103

    Abstract: Recent projects conducted by the International Cancer Genome Consortium (ICGC) have raised the important issue of distinguishing quality assurance (QA) activities from research in the context of genomics. Research was historically defined as a systematic ...

    Abstract Recent projects conducted by the International Cancer Genome Consortium (ICGC) have raised the important issue of distinguishing quality assurance (QA) activities from research in the context of genomics. Research was historically defined as a systematic effort to expand a shared body of knowledge, whereas QA was defined as an effort to ascertain whether a specific project met desired standards. However, the two categories increasingly overlap due to advances in bioinformatics and the shift toward open science. As few ethics review policies take these changes into account, it is often difficult to determine the appropriate level of review. Mislabeling can result in unnecessary burdens for the investigators or, conversely, in underestimation of the risks to participants. Therefore, it is important to develop a consistent method of selecting the review process for genomics and bioinformatics projects. This paper begins by discussing two case studies from the ICGC, followed by a literature review on the distinction between QA and research and a comparative analysis of ethics review policies from Canada, the United States, the United Kingdom, and Australia. These results are synthesized into a novel two-step decision tool for researchers and policymakers, which uses traditional criteria to sort clearly defined activities while requiring the use of actual risk levels to decide more complex cases.
    MeSH term(s) Decision Making, Organizational ; Ethical Review/standards ; Genetic Association Studies/ethics ; Genetic Association Studies/standards ; Genomics/ethics ; Genomics/standards ; Guidelines as Topic
    Language English
    Publishing date 2016-08
    Publishing country England
    Document type Journal Article ; Review
    ZDB-ID 1141470-4
    ISSN 1476-5438 ; 1018-4813
    ISSN (online) 1476-5438
    ISSN 1018-4813
    DOI 10.1038/ejhg.2015.279
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  8. Article: Patenting DNA.

    Bobrow, Martin / Thomas, Sandy

    Current opinion in molecular therapeutics

    2002  Volume 4, Issue 6, Page(s) 542–547

    Abstract: The protection of inventions based on human DNA sequences has been achieved mainly through application of the patent system. Over the past decade, there has been continuing debate about whether this use of intellectual property rights is acceptable. ... ...

    Abstract The protection of inventions based on human DNA sequences has been achieved mainly through application of the patent system. Over the past decade, there has been continuing debate about whether this use of intellectual property rights is acceptable. Companies and universities have been active during this period in filing thousands of patent applications. Although many have argued that to claim a DNA sequence in a patent is to claim a discovery, patent law allows discoveries that are useful to be claimed as part of an invention. As the technology to isolate DNA sequences has advanced, the criterion for inventiveness, necessary for any invention to be eligible for filing, has become more difficult to justify in the case of claims to DNA sequences. Moreover, the discovery that a gene is associated with a particular disease is, it is argued, to discover a fact about the world and undeserving of the status of an invention. Careful examination of the grounds for allowing the patenting of DNA sequences as research tools suggests such rewards will rarely be justified. The patenting of DNA sequences as chemical intermediates necessary for the manufacture of therapeutic proteins is, however, reasonable given that the information within the sequence is applied to produce a tangible substance which has application as a medicine. Despite the legal, technical and political complexities of applying the flexibilities with the current law, it is argued that much could be achieved in the area of patenting DNA by raising the thresholds for patentability.
    MeSH term(s) Animals ; DNA/genetics ; Databases, Nucleic Acid/legislation & jurisprudence ; Humans ; Patents as Topic/legislation & jurisprudence
    Chemical Substances DNA (9007-49-2)
    Language English
    Publishing date 2002-12
    Publishing country England
    Document type Journal Article ; Review
    ZDB-ID 2022273-7
    ISSN 1464-8431
    ISSN 1464-8431
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  9. Article ; Online: Consent recommendations for research and international data sharing involving persons with dementia.

    Thorogood, Adrian / Mäki-Petäjä-Leinonen, Anna / Brodaty, Henry / Dalpé, Gratien / Gastmans, Chris / Gauthier, Serge / Gove, Dianne / Harding, Rosie / Knoppers, Bartha Maria / Rossor, Martin / Bobrow, Martin

    Alzheimer's & dementia : the journal of the Alzheimer's Association

    2018  Volume 14, Issue 10, Page(s) 1334–1343

    Abstract: Consent is generally required for research and sharing rich individual-level data but presents additional ethical and legal challenges where participants have diminished decision-making capacity. We formed a multi-disciplinary team to develop best ... ...

    Abstract Consent is generally required for research and sharing rich individual-level data but presents additional ethical and legal challenges where participants have diminished decision-making capacity. We formed a multi-disciplinary team to develop best practices for consent in data-intensive dementia research. We recommend that consent processes for research and data sharing support decision-making by persons with dementia, protect them from exploitation, and promote the common good. Broad consent designed to endure beyond a loss of capacity and combined with ongoing oversight can best achieve these goals. Persons with dementia should be supported to make decisions and enabled to express their will and preferences about participation in advance of a loss of capacity. Regulatory frameworks should clarify who can act as a representative for research decisions. By promoting harmonization of consent practices across institutions, sectors, and countries, we hope to facilitate data sharing to accelerate progress in dementia research, care, and prevention.
    MeSH term(s) Biomedical Research ; Dementia/diagnosis ; Dementia/therapy ; Humans ; Information Dissemination/ethics ; Information Dissemination/legislation & jurisprudence ; Information Dissemination/methods ; Informed Consent/ethics ; Informed Consent/legislation & jurisprudence ; Internationality
    Language English
    Publishing date 2018-07-02
    Publishing country United States
    Document type Consensus Development Conference ; Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 2211627-8
    ISSN 1552-5279 ; 1552-5260
    ISSN (online) 1552-5279
    ISSN 1552-5260
    DOI 10.1016/j.jalz.2018.05.011
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  10. Article: The social consequences of advances in the clinical applications of genetics

    Bobrow, Martin / Manners, Elizabeth

    Life and death under high technology medicine

    (Fulbright papers ; 15)

    1994  

    Author's details Martin Bobrow and Elizabeth Manners
    Series title Fulbright papers ; 15
    MeSH term(s) Genetic Testing ; Abortion, Eugenic ; Family ; Genetic Diseases, Inborn ; Genetic Privacy ; Genetic Therapy ; Heterozygote Detection ; Insurance ; Mass Screening ; Prenatal Diagnosis ; Social Change
    Keywords Genetics and Reproduction
    Language English
    Size p. [21]-35.
    Publisher Manchester University Press in association with the Fulbright Commission, London ; Distributed exclusively in the USA and Canada by St. Martin's Press
    Publishing place Manchester, UK ; New York, NY, USA
    Document type Article
    Note Book editor: Ian Robinson.
    ISBN 0719035902 ; 9780719035906
    Database Catalogue of the US National Library of Medicine (NLM)

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