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  1. Toward Justice and Community Empowerment in Genomics Studies on Sensitive Traits.Heini M. Natri & Carolyn Riley Chapman - 2024 - Hastings Center Report 54 (S2).
    Community engagement and participatory research have been appropriately employed to increase the relevance, rigor, and acceptability of all types of research, but these approaches may be particularly important in genomics and biomedical research on sensitive traits such as neurodevelopmental, psychiatric, and behavioral ones. Here, we provide an overview of past and ongoing efforts in community engagement in genomics studies and consider successes and opportunities for further improvement. Informed by this knowledge as well as one of the author's experiences, we set (...)
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  • Confronting the “Weaponization” of Genetics by Racists Online and Elsewhere.Aaron Panofsky, Kushan Dasgupta, Nicole Iturriaga & Bernard Koch - 2024 - Hastings Center Report 54 (S2):14-21.
    Genomics research is regularly appropriated in social and political contexts to publicly legitimize unjust and malicious political views, policies, and actions. In recent years, there have been high‐profile cases of mass shooters, public intellectuals, and political insiders using genomics findings to convince audiences that deadly force and coercive policies against racial minorities are warranted. To create a just genomics, geneticists must consider what makes their research so attractive and adaptable for the legitimization of unjust ends and what they can do (...)
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  • Can Open Science Advance Health Justice? Genomic Research Dissemination in the Evolving Data‐Sharing Landscape.Stephanie A. Kraft & Kathleen F. Mittendorf - 2024 - Hastings Center Report 54 (S2).
    Scientific data‐sharing and open science initiatives are increasingly important mechanisms for advancing the impact of genomic research. These mechanisms are being implemented as growing attention is paid to the need to improve the inclusion of research participants from marginalized and underrepresented groups. Together, these efforts aim to promote equitable advancements in genomic medicine. However, if not guided by community‐informed protections, these efforts may harm the very participants and communities they aim to benefit. This essay examines potential benefits and harms of (...)
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  • “Ethical Responsibility Very Often Gets Drowned Out”: A Qualitative Interview Study of Genome Scientists’ and ELSI Scholars’ Perspectives on the Role and Relevance of ELSI Expertise.Daphne O. Martschenko, Anna Granucci & Mildred K. Cho - 2024 - AJOB Empirical Bioethics 15 (4):312-323.
    Background Genome scientists and Ethical, Legal, and Social Implications of genetics (ELSI) scholars commonly inhabit distinct research cultures – utilizing different research methods, asking different research questions, and valuing different types of knowledge. Collaborations between these two communities are frequently called for to enhance the ethical conduct of genomics research. Yet, little has been done to qualitatively compare genome scientists’ and ELSI scholars’ perspectives on collaborations with each other and the factors that may affect these collaborations.Methods 20 semi-structured interviews with (...)
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  • (1 other version)Heritability.Stephen M. Downes & Lucas J. Matthews - 2019 - Stanford Encyclopedia of Philosophy.
    Lucas Matthews and I substantially revised my SEP entry on Heritability. This version includes discussion of the missing heritability problem and other issues that arise from the use of Genome Wide Association Studies by Behavioral Geneticists.
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  • (1 other version)Heritability.Stephen M. Downes - 2015 - Stanford Encyclopedia of Philosophy.
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