Subject(s)
Genomics , Health Equity , Intersectoral Collaboration , Humans , Genomics/methods , Genomics/trendsABSTRACT
Trustworthy science requires research practices that center issues of ethics, equity, and inclusion. We announce the Leadership in the Equitable and Ethical Design (LEED) of Science, Technology, Mathematics, and Medicine (STEM) initiative to create best practices for integrating ethical expertise and fostering equitable collaboration.
Subject(s)
Leadership , Technology , MathematicsABSTRACT
In this essay, I argue that to create a genomics that offers more gifts than weights, central attention must be paid to questions of justice. This will require expanding bioethical imaginations so that they grasp and can respond to questions of structural inequity. It will necessitate building novel coalitions and collaborations that turn the attention of bioethical governance away from narrow individual questions such as, "Do I consent?" and toward the broader collective question, is this just? What kind of lives and collectivities are made possible? What rights and principles should govern them? The essay ends with one example of this novel coalition building arising from the Science and Justice Research Center at the University of California, Santa Cruz. It draws lessons from this effort to build new alliances that bridge the social sciences and natural sciences, arts and engineering, to create new kinds of training and thinking that create a genomics that more adequately responds to fundamental questions of justice.
Subject(s)
Bioethics , Social Justice , Genomics/ethics , Humans , Informed ConsentSubject(s)
Genome , Morals , Catholicism , France , Humans , Interprofessional Relations , Racial Groups , Rome , UNESCOABSTRACT
In February 1996, the genome community met in Bermuda to formulate principles for circulating genomic data. Although it is now 20 years since the Bermuda Principles were formulated, they continue to play a central role in shaping genomic and data-sharing practices. However, since 1996, "openness" has become an increasingly complex issue. This commentary seeks to articulate three core challenges data-sharing faces today.
Subject(s)
Genome, Human , Genomics/history , Information Dissemination , Bermuda , History, 20th Century , HumansABSTRACT
At stake in the debate about personal genomics is what kind of person can be trusted to interpret genomes. Deciding this hinges not just on determining if consumers can interpret genomic information, but on deciding which biological and medical experts (if any) can perform these interpretive acts. Understanding why personal genomics has generated such tension and attention requires bringing these struggles, over who can interpret 'the code of life', into focus. While debates about personal genomics focus largely on relatively narrow issues of fraud and deception, this emerging new scientific and political terrain poses more fundamental questions about how the study of biological life, as well as the organization of democratic life, should proceed in genomic times.
