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1.
Cell Genom ; 4(5): 100554, 2024 May 08.
Artigo em Inglês | MEDLINE | ID: mdl-38697124

RESUMO

Despite the profound impacts of scientific research, few scientists have received the necessary training to productively discuss the ethical and societal implications of their work. To address this critical gap, we-a group of predominantly human genetics trainees-developed a course on genetics, ethics, and society. We intend for this course to serve as a template for other institutions and scientific disciplines. Our curriculum positions human genetics within its historical and societal context and encourages students to evaluate how societal norms and structures impact the conduct of scientific research. We demonstrate the utility of this course via surveys of enrolled students and provide resources and strategies for others hoping to teach a similar course. We conclude by arguing that if we are to work toward rectifying the inequities and injustices produced by our field, we must first learn to view our own research as impacting and being impacted by society.


Assuntos
Currículo , Humanos , Ciência/educação , Ciência/ética
2.
Pac Symp Biocomput ; 29: 645-649, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38160313

RESUMO

The following sections are included:Workshop DescriptionLearning ObjectivesPresenter InformationAbout the Workshop OrganizersPresentationsSpeaker Presentations.


Assuntos
Biologia Computacional , Responsabilidade Social , Humanos
5.
J Community Genet ; 14(5): 459-469, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-36765027

RESUMO

As genomic technologies rapidly develop, polygenic scores (PGS) are entering into a growing conversation on how to improve precision in public health and prevent chronic disease. While the integration of PGS into public health and clinical services raises potential benefits, it also introduces potential harms. In particular, there is a high level of uncertainty about how to incorporate PGS into clinical settings in a manner that is equitable, just, and aligned with the long-term goals of many healthcare systems to support person-centered and value-based care. This paper argues that any conversation about whether and how to design and implement PGS clinical services requires dynamic engagement with local communities, patients, and families. These parties often face the consequences, both positive and negative, of such uncertainties and should therefore drive clinical translation. As a collaborative effort between hospital stakeholders, community partners, and researchers, this paper describes a community-empowered co-design process for addressing uncertainty and making programmatic decisions about the implementation of PGS into clinical services. We provide a framework for others interested in designing clinical programs that are responsive to, and inclusive and respectful of, local communities.

6.
Ann N Y Acad Sci ; 1522(1): 5-14, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36851882

RESUMO

New interdisciplinary research into genetic influences on musicality raises a number of ethical and social issues for future avenues of research and public engagement. The historical intersection of music cognition and eugenics heightens the need to vigilantly weigh the potential risks and benefits of these studies and the use of their outcomes. Here, we bring together diverse disciplinary expertise (complex trait genetics, music cognition, musicology, bioethics, developmental psychology, and neuroscience) to interpret and guide the ethical use of findings from recent and future studies. We discuss a framework for incorporating principles of ethically and socially responsible conduct of musicality genetics research into each stage of the research lifecycle: study design, study implementation, potential applications, and communication.


Assuntos
Bioética , Cognição , Genética Humana , Música , Humanos
9.
Science ; 378(6616): 141-143, 2022 10 14.
Artigo em Inglês | MEDLINE | ID: mdl-36227983

RESUMO

Data sharing must be accompanied by responsibility sharing.


Assuntos
Disseminação de Informação
10.
Front Genet ; 13: 795992, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35559033

RESUMO

Precision medicine offers a precious opportunity to change clinical practice and disrupt medicine's reliance on crude racial, ethnic, or ancestral categories by focusing on an individual's unique genetic, environmental, and lifestyle characteristics. However, precision medicine and the genomic studies that are its cornerstone have thus far failed to account for human diversity. This failure is made clearer when looking at individuals who encapsulate a mosaic of different genetic ancestries and do not fit neatly into existing population labels. This piece argues that precision medicine continues to rely on the same forms of crude categorization it seeks to unsettle. Until the scientific community creates inclusive solutions for individuals who fall outside or between our existing population labels, precision medicine will continue to fall short in its aims.

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