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3 Guiding Principles
Pages 95-100

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From page 95...
... Thus, the guiding principles provide a foundation and common vocabulary for interested parties to engage in future decision making for contexts that may not be addressed directly in this report. The guiding principles outlined here address the ethical responsibilities of respect, beneficence, equity, and justice, as well as scientific standards of validity, reproducibility, transparency, and replicability.
From page 96...
... . Trustworthiness of research depends on investigators demonstrating respect toward participants throughout the life course of a study, including study design, informed consent, managing samples, protecting private information, data safety monitoring, and dissemination (Beskow et al., 2021)
From page 97...
... Embedded within these commitments is a responsibility to ensure representative sampling wherever possible to answer specific research questions or achieve particular research goals. A commitment to equity and justice, though, should be more than assessing representation in research participation; it should include addressing inequities in the scientific workforce and who is conducting research on whom, and their effects on the use of population descriptors in genetics research.
From page 98...
... For example, providing detailed definitions and descriptions of methodologies for selecting and applying population descriptors will support reproducibility of study findings across studies and the potential for accurately understanding study results. Transparency and Replicability2 The principle of transparency includes the obligation to provide clear rationale for the selection and use of population descriptors and to explain decision-making processes in an open and accessible manner.
From page 99...
... The committee encourages all relevant parties, including researchers, institutions, funders, professional organizations, journals, media, and communities, to assess and engage in the discussion of how practices contribute to synergies among, and tensions between, guiding principles. The committee underscores the importance of collaboration when resolving competing interests.
From page 100...
... 2022. Increasing diversity in genomics requires investment in equitable partnerships and capacity building.

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