We need an international infrastructure for the ethical, legal and social implications of genomic research.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4151290 | PMC |
http://dx.doi.org/10.1126/science.1218015 | DOI Listing |
Sixty-one million Americans and approximately a billion people worldwide live with some form of disability that limits one or more major life activities. The field of precision medicine continues to grapple with how to best serve disability communities. In this paper, we suggest that precision medicine faces an ethical tension between its goal to treat or cure disabling conditions and views that consider disability as a marginalized identity.
View Article and Find Full Text PDFJ Law Med Ethics
December 2024
UNIVERSITY OF MIAMI, MIAMI, FLORIDA, USA.
In the evolving field of advanced biopreservation technologies, the development of suspended animation (SA) is inspired by real-world challenges. In the context of space exploration, SA is seen as a solution to enable humans to undertake missions far beyond low Earth orbit, including routine travel to other planets in our solar system and beyond. While work on the socio-ethical and legal implications (ELSI) of space exploration continues to evolve, NASA has committed to make ethics a priority issue, making this a fruitful field for further examination.
View Article and Find Full Text PDFRejuvenation Res
August 2024
Department of Bioethics and Health Humanities, The University of Texas Medical Branch, Galveston, Texas, USA.
Geroscience, or longevity biotechnology, has made impressive advances in recent years that have led to the founding of dozens of start-ups, nonprofits and advocacy organizations, and the formation of a global movement to defeat aging. The community envisions changes at the regulatory and policy levels and calls for increased funding for research. Nevertheless, progress in the field has not been matched by discussions about ethical, legal, and social implications, as longevity advocates assume that seeking to expand lifespan or health span is inherently desirable and permissible.
View Article and Find Full Text PDFJ Bus Ethics
May 2023
Health Ethics and Policy Lab, ETH Zurich, Hottingerstrasse 10, 8032 Zurich, Switzerland.
Data access and data sharing are vital to advance medicine. A growing number of public private partnerships are set up to facilitate data access and sharing, as private and public actors possess highly complementary health data sets and treatment development resources. However, the priorities and incentives of public and private organizations are frequently in conflict.
View Article and Find Full Text PDFAm J Med Genet A
July 2024
Department of Public Health and Primary Care, Centre for Biomedical Ethics and Law, KU Leuven, Leuven, Belgium.
Debates about the prospective clinical use of polygenic risk scores (PRS) have grown considerably in the last years. The potential benefits of PRS to improve patient care at individual and population levels have been extensively underlined. Nonetheless, the use of PRS in clinical contexts presents a number of unresolved ethical challenges and consequent normative gaps that hinder their optimal implementation.
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