Monthly Digest :: Blog Posts

  • Genomic Medicine :: Governance, Ethics, Policy, Practice: A Monthly Digest

    September 2023 :: Number 07

    Genomic medicine – spanning preclinical basic science through clinical development and translation into daily patient interventions – continues to evolve at an extraordinary pace. Advances in the scientific and technical dimensions of genomic medicine are extensively communicated through the peer-reviewed journal ecology and supporting grey literature.

    Complementing this technical literature is a growing body of commentary, analysis and research around the governance, ethics, regulation, and policy dimensions of genomic medicine. Much of this content is communicated through academic journals and grey literature, but is also appearing in the general media. This digest intends to capture and curate the most substantive examples of this non-technical content.

    In aggregating and editing this digest, we directly review a broad spectrum of peer-reviewed journals and grey literature, as well as announcements and strategic actions from various practice domains and organization types including international agencies, INGOs, governments/regulatory bodies, academic and research institutions, consortia and collaborations, foundations, and commercial organizations. More broadly, we utilize Google Scholar’s alert capability to scan current literature. We acknowledge that this approach and scope yields an indicative and not an exhaustive digest p

    Genomic medicine – spanning pre-clinical basic science through clinical development and translation to daily patient interventions – continues to evolve at an extraordinary pace. Advances in the scientific and technical dimensions of genomic medicine are extensively communicated through the peer-reviewed journal literature and supporting grey literature.

    Complementing this technical literature is a growing body of research, analysis and commentary addressing the governance, ethics, regulation, and policy dimensions of genomic medicine. Much of this content is communicated through academic journals and grey literature. This digest intends to capture and curate the most substantive examples of this non-technical content.

    Further, we intend this digest to provide a useful summary of key strategic and programmatic announcements from across the genomic medicine ecology as issued by multilateral agencies, INGOs, governments/regulatory bodies, academic and research institutions, consortiums and collaborations, foundations, investors, and commercial organizations.

    Given the complexity and velocity of the field, we recognize that this digest will be indicative, not exhaustive. We invite suggestions and ideas on how it can evolve to be more useful.

    The digest is a program of the GE2P2 Global Foundation which is solely responsible for its content. Questions and comments should be directed to the Editor david.r.curry@ge2p2global.org or Associate Editor daima.bukini@ge2p2global.org.

    ge2p2-global_genomic-medicine-digest_september-2023_finalDownload

  • Genomic Medicine :: Governance, Ethics, Policy, Practice: A Monthly Digest

    July 2023 :: Number 06

    Genomic medicine – spanning preclinical basic science through clinical development and translation into daily patient interventions – continues to evolve at an extraordinary pace. Advances in the scientific and technical dimensions of genomic medicine are extensively communicated through the peer-reviewed journal ecology and supporting grey literature.

    Complementing this technical literature is a growing body of commentary, analysis and research around the governance, ethics, regulation, and policy dimensions of genomic medicine. Much of this content is communicated through academic journals and grey literature, but is also appearing in the general media. This digest intends to capture and curate the most substantive examples of this non-technical content.

    In aggregating and editing this digest, we directly review a broad spectrum of peer-reviewed journals and grey literature, as well as announcements and strategic actions from various practice domains and organization types including international agencies, INGOs, governments/regulatory bodies, academic and research institutions, consortia and collaborations, foundations, and commercial organizations. More broadly, we utilize Google Scholar’s alert capability to scan current literature. We acknowledge that this approach and scope yields an indicative and not an exhaustive digest p

    Genomic medicine – spanning pre-clinical basic science through clinical development and translation to daily patient interventions – continues to evolve at an extraordinary pace. Advances in the scientific and technical dimensions of genomic medicine are extensively communicated through the peer-reviewed journal literature and supporting grey literature.

    Complementing this technical literature is a growing body of research, analysis and commentary addressing the governance, ethics, regulation, and policy dimensions of genomic medicine. Much of this content is communicated through academic journals and grey literature. This digest intends to capture and curate the most substantive examples of this non-technical content.

    Further, we intend this digest to provide a useful summary of key strategic and programmatic announcements from across the genomic medicine ecology as issued by multilateral agencies, INGOs, governments/regulatory bodies, academic and research institutions, consortiums and collaborations, foundations, investors, and commercial organizations.

    Given the complexity and velocity of the field, we recognize that this digest will be indicative, not exhaustive. We invite suggestions and ideas on how it can evolve to be more useful.

    The digest is a program of the GE2P2 Global Foundation which is solely responsible for its content. Questions and comments should be directed to the Editor david.r.curry@ge2p2global.org or Associate Editor daima.bukini@ge2p2global.org.

    ge2p2-global_genomic-medicine-digest_july-2023_finalDownload

  • Genomic Medicine Governance, Ethics, Policy, Practice: A Monthly Digest

    June 2023 :: Number 05

    Genomic medicine – spanning pre-clinical basic science through clinical development and translation into daily patient interventions – continues to evolve at an extraordinary pace. Advances in the scientific and technical dimensions of genomic medicine are extensively communicated through the peer-reviewed journal ecology and supporting grey literature.

    Complementing this technical literature is a growing body of commentary, analysis and research around the governance, ethics, regulation, and policy dimensions of genomic medicine. Much of this content is communicated through academic journals and grey literature, but is also appearing in the general media. This digest intends to capture and curate the most substantive examples of this non-technical content.

    In aggregating and editing this digest, we directly review a broad spectrum of peer-reviewed journals and grey literature, as well as announcements and strategic actions from various practice domains and organization types including international agencies, INGOs, governments/regulatory bodies, academic and research institutions, consortia and collaborations, foundations, and commercial organizations. More broadly, we utilize Google Scholar’s alert capability to scan current literature. We acknowledge that this approach and scope yields an indicative and not an exhaustive digest product.

    This digest is a service of the GE2P2 Global Foundation and its newly formed Center for Genomic Medicine Governance, Ethics & Policy. The Foundation is solely responsible for its content. Comments and suggestions should be directed to the Editor or Associate Editor as below:

    ge2p2-global_genomic-medicine-digest_june-2023_finalDownload

  • Genomic Medicine Governance, Ethics, Policy, Practice: A Monthly Digest

    May 2023 :: Number 05

    Genomic medicine – spanning pre-clinical basic science through clinical development and translation into daily patient interventions – continues to evolve at an extraordinary pace. Advances in the scientific and technical dimensions of genomic medicine are extensively communicated through the peer-reviewed journal ecology and supporting grey literature.

    Complementing this technical literature is a growing body of commentary, analysis and research around the governance, ethics, regulation, and policy dimensions of genomic medicine. Much of this content is communicated through academic journals and grey literature, but is also appearing in the general media. This digest intends to capture and curate the most substantive examples of this non-technical content.

    In aggregating and editing this digest, we directly review a broad spectrum of peer-reviewed journals and grey literature, as well as announcements and strategic actions from various practice domains and organization types including international agencies, INGOs, governments/regulatory bodies, academic and research institutions, consortia and collaborations, foundations, and commercial organizations. More broadly, we utilize Google Scholar’s alert capability to scan current literature. We acknowledge that this approach and scope yields an indicative and not an exhaustive digest product.

    This digest is a service of the GE2P2 Global Foundation and its newly formed Center for Genomic Medicine Governance, Ethics & Policy. The Foundation is solely responsible for its content. Comments and suggestions should be directed to the Editor or Associate Editor as below:

    ge2p2-global_genomic-medicine-digest_may-2023_number-5Download

  • Genomic Medicine Governance, Ethics, Policy, Practice: A Monthly Digest

    April 2023 :: Number 04

    Genomic medicine – spanning pre-clinical basic science through clinical development and translation into daily patient interventions – continues to evolve at an extraordinary pace. Advances in the scientific and technical dimensions of genomic medicine are extensively communicated through the peer-reviewed journal ecology and supporting grey literature.

    Complementing this technical literature is a growing body of commentary, analysis and research around the Aprilgovernance, ethics, regulation, and policy dimensions of genomic medicine. Much of this content is communicated through academic journals and grey literature, but is also appearing in the general media. This digest intends to capture and curate the most substantive examples of this non-technical content.

    In aggregating and editing this digest, we directly review a broad spectrum of peer-reviewed journals and grey literature, as well as announcements and strategic actions from various practice domains and organization types including international agencies, INGOs, governments/regulatory bodies, academic and research institutions, consortiums and collaborations, foundations, and commercial organizations. More broadly, we utilize Google Scholar’s alert capability to scan current literature. We acknowledge that this approach and scope yields an indicative and not an exhaustive digest product.

    This digest is a service of the GE2P2 Global Foundation and its newly formed Center for Genomic Medicine Governance, Ethics & Policy. The Foundation is solely responsible for its content. Comments and suggestions should be directed to the Editor or Associate Editor as below:

    ge2p2-global_genomic-medicine-digest_april-2023_finalDownload

  • Genomic Medicine Governance, Ethics, Policy, Practice: A Monthly Digest

    March 2023

    Genomic medicine – spanning pre-clinical basic science through clinical development and translation into daily patient interventions – continues to evolve at an extraordinary pace. Advances in the scientific and technical dimensions of genomic medicine are extensively communicated through the peer-reviewed journal ecology and supporting grey literature.

    Complementing this technical literature is a growing body of commentary, analysis and research around the governance, ethics, regulation, and policy dimensions of genomic medicine. Much of this content is communicated through academic journals and grey literature, but is also appearing in the general media. This digest intends to capture and curate the most substantive examples of this non-technical content.

    In aggregating and editing this digest, we directly review a broad spectrum of peer-reviewed journals and grey literature, as well as announcements and strategic actions from various practice domains and organization types including international agencies, INGOs, governments/regulatory bodies, academic and research institutions, consortiums and collaborations, foundations, and commercial organizations. More broadly, we utilize Google Scholar’s alert capability to scan current literature. We acknowledge that this approach and scope yields an indicative and not an exhaustive digest product.

    This digest is a service of the GE2P2 Global Foundation and its newly formed Center for Genomic Medicine Governance, Ethics & Policy. The Foundation is solely responsible for its content. Comments and suggestions should be directed to the Editor or Associate Editor as below:

    ge2p2-global_genomic-medicine-governance-ethics-policy-practice-e28093-a-monthly-digest_march-2023_-finalDownload

  • Getting genetic ancestry right for science and society
    We must embrace a multidimensional, continuous view of ancestry and move away from continental ancestry categories
    Anna C. F. Lewis, et al.
    Policy Forum
    Science, Volume 376| Issue 6591| 22 Apr 2022
    Abstract

    Glaring health disparities have reinvigorated debate about the relevance of race to health, including how race should and should not be used as a variable in research and biomedicine (1). After a long history of race being treated as a biological variable, there is now broad agreement that racial classifications are a product of historically contingent social, economic, and political processes. Many institutions have thus been reexamining their use of race and racism and stating intentions about how race should be used going forward. One common proposal is to use genetic concepts—in particular, genetic ancestry and population categories—as a replacement for race (2). However, the use of ancestry categories has technical limitations, fails to adequately capture human genetic diversity and demographic history, and risks retaining one of the most problematic aspects of race—an essentialist link to biology—by allowing genetic ancestry categories to stand in its place.

  • Polygenic prediction of educational attainment within and between families from genome-wide association analyses in 3 million individuals
    A genome-wide association study in ~3 million individuals identifies 3,952 independent variants associated with educational attainment. A polygenic index explains 12–16% of variance for this trait and contributes to risk prediction for ten diseases.
    Aysu Okbay, Yeda Wu, Alexander I. Young
    Article | 31 March 2022 | Open Access
    Nature Genetics, Volume 54 Issue 4, April 2022
    Abstract
    We conduct a genome-wide association study (GWAS) of educational attainment (EA) in a sample of ~3 million individuals and identify 3,952 approximately uncorrelated genome-wide-significant single-nucleotide polymorphisms (SNPs). A genome-wide polygenic predictor, or polygenic index (PGI), explains 12–16% of EA variance and contributes to risk prediction for ten diseases. Direct effects (i.e., controlling for parental PGIs) explain roughly half the PGI’s magnitude of association with EA and other phenotypes. The correlation between mate-pair PGIs is far too large to be consistent with phenotypic assortment alone, implying additional assortment on PGI-associated factors. In an additional GWAS of dominance deviations from the additive model, we identify no genome-wide-significant SNPs, and a separate X-chromosome additive GWAS identifies 57.

  • Expanding global access to genetic therapies
    AWT Muigai, School of Biological Sciences, Jomo Kenyatta University of Agriculture and Technology, Nairobi, Kenya
    World View, Published: 07 January 2022
    Nature Biotechnology, 40, pages 20–21 (2022)
    [Excerpt]
    …The era of genetic therapies — both gene-editing treatments and gene therapies, several of which are now on the market — has arrived for rare disease. But as more of these therapies come online, it is time to explore how current business models based on patents and restrictive licensing limit access to treatments. It is also time to explore whether there are other ways in which patents can still reward innovators and protect investments while ensuring that the widest number of patients who need these treatments can receive them…

  • Comparison of public discussions of gene editing on social media between the United States and China
    J Ji, M Robbins, JD Featherstone, C Calabrese… –
    PloS ONE,  Published: May 2, 2022, https://doi.org/10.1371/journal.pone.0267406
    Abstract
    The world’s first gene-edited babies event has stirred controversy on social media over the use of gene editing technology. Understanding public discussions about this controversy will provide important insights about opinions of science and facilitate informed policy decisions. This study compares public discussion topics about gene editing on Twitter and Weibo, as well as the evolution of these topics over four months. Latent Dirichlet allocation (LDA) was used to generate topics for 11,244 Weibo posts and 57,525 tweets from September 25, 2018, to January 25, 2019. Results showed a difference between the topics on Twitter versus Weibo: there were more nuanced discussions on Twitter, and the discussed topics between platforms focused on different areas. Temporal analysis showed that most discussions took place around gene-edited events. Based on our findings, suggestions were provided for policymakers and science communication practitioners to develop more effective communication strategies toward audiences in China and the U.S.