Massive RNA sequencing effort proposed.

U.S. plan would harness the "RNome" for medicine and more-but funding is uncertain.

The interplay of ethics and genetic technologies in balancing the social valuation of the human genome in UNESCO declarations.

This study investigates changes in the social valuation of the human genome over the more than 30 years since the establishment of the Human Genome Project. It offers a descriptive sociological analysis of the three waves of this valuation, mainly by considering three key UNESCO declarations and a relevant report. These waves represent a shifting balance between collectivism and individualism, starting with a broadly constructed valuation of the human genome as common human heritage and moving toward a valuation of dynamic applications within various social and medical contexts (e.g., personalized genomic medicine and genome editing). We seek to broaden the analytical perspective by examining how the declarations' ethical foci are framed within the context of rapidly evolving genetic technologies and their social applications. We conclude by discussing continuity and change in value balancing vis-à-vis changing genomic technologies.

The Human Genome Organisation (HUGO) and a vision for Ecogenomics: the Ecological Genome Project.

BACKGROUND: The following outlines ethical reasons for widening the Human Genome Organisation's (HUGO) mandate to include ecological genomics. MAIN: The environment influences an organism's genome through ambient factors in the biosphere (e.g. climate and UV radiation), as well as the agents it comes into contact with, i.e. the epigenetic and mutagenic effects of inanimate chemicals and pollution, and pathogenic organisms. Emerging scientific consensus is that social determinants of health, environmental conditions and genetic factors work together to influence the risk of many complex illnesses. That paradigm can also explain the environmental and ecological determinants of health as factors that underlie the (un)healthy ecosystems on which communities rely. We suggest that The Ecological Genome Project is an aspirational opportunity to explore connections between the human genome and nature. We propose consolidating a view of Ecogenomics to provide a blueprint to respond to the environmental challenges that societies face. This can only be achieved by interdisciplinary engagement between genomics and the broad field of ecology and related practice of conservation. In this respect, the One Health approach is a model for environmental orientated work. The idea of Ecogenomics-a term that has been used to relate to a scientific field of ecological genomics-becomes the conceptual study of genomes within the social and natural environment. CONCLUSION: The HUGO Committee on Ethics, Law and Society (CELS) recommends that an interdisciplinary One Health approach should be adopted in genomic sciences to promote ethical environmentalism. This perspective has been reviewed and endorsed by the HUGO CELS and the HUGO Executive Board.

A matter of life and longer life.

While the major scientific discoveries that would extend the length and health of human lives are not yet here, the research that could create them is already underway. As prospects for a world in which extended and improved lives inches closer into reality, the discourse about what to consider as we move forward grows richer, with corporate executives, ideologues, scientists, theologians, ethicists, investigative journalists, and philosophers taking part in imagining and anticipating the rich array of humanity's possible futures. Drawing from in-depth interviews with key stakeholders (n = 22), we offer empirical insights into key values and beliefs animating the "longevity movement," including what constitutes an ideal human state, the imperative to intervene, and the role of individual liberty and concerns for equality. Emerging from these interviews are common concerns about reducing suffering, preserving diversity in visions of successful aging and how best to promote access to a future that may not remain hypothetical for long.

LeRoy Walters's Legacy of Bioethics in Genetics and Biotechnology Policy.

LeRoy Walters was at the center of public debate about emerging biological technologies, even as "biotechnology" began to take root. He chaired advisory panels on human gene therapy, the human genome project, and patenting DNA for the congressional Office of Technology Assessment. He chaired the subcommittee on Human Gene Therapy for NIH's Recombinant DNA Advisory Committee. He was also a regular advisor to Congress, the executive branch, and academics concerned about policy governing emerging biotechnologies. In large part due to Prof. Walters, the Kennedy Institute of Ethics was one of the primary sources of talent in bioethics, including staff who populated policy and science agencies dealing with reproductive and genetic technologies, such as NIH and OTA. His legacy lies not only in his writings, but in those people, documents, and discussions that guided biotechnology policy in the United States for three decades.

The social life of DNA: racial reconciliation and institutional morality after the genome.

This 2017 British Journal of Sociology Lecture builds upon ideas developed in The Social Life of DNA: Race, Reparations, and Reconciliation after the Genome (Nelson 2016). I argue that one of the more significant developments of the postgenomic era is the circulation of DNA analysis outside of the life sciences, especially commercial applications such as direct-to-consumer genealogical testing. These tests are increasingly taken up in 'reconciliation projects' - endeavours in which DNA analysis is put to the use of repairing the past, including a recently launched attempt in the United States to locate descendants of enslaved persons sold by the Jesuit stewards of Georgetown College in order to bolster that institution's finances. With this reconciliation project, genetic genealogy has become a vehicle for a form of social repair, and most particularly, the reuniting of 'lost' kin. This use of genetic genealogy takes place against the backdrop of an expanding, national inquiry into ties between education and slavery. In the process, the legacy of racial slavery is rendered both contemporary and proximate, despite a 'colour-blind' racial project that aims to negate the significance of this history and its coeval development with US higher education. Elite educational institutions such as Georgetown that elect to excavate these histories are soon after faced with the choice of how to respond, on campus and beyond, to revelations of entanglements between edification and bondage. However imperfectly, colleges and universities are among the few institutional settings where the contested issue of structural racism (and remedies to it) may be aired. It is in these fraught debates that the exercise of 'institutional morality' can take shape; organizations engage in practices that articulate institutional values and are faced with a choice of symbolic and distributional responses.

[From HGP-write to « Ultra-safe Cells ¼]. / De HGP-write aux « super-cellules ¼ - Chroniques génomiques.

The HGP-write project, announced in 2016 but not really implemented yet, comes back as a project aimed at constructing an "ultra-safe" human cell line fully resistant to virus infection and with other desirable characteristics. This involves introducing 400,000 changes in the genome and raises a number of technical and financial issues, but may become realistic in mid-term.

More than Moore's Mores: Computers, Genomics, and the Embrace of Innovation.

The genomics community has frequently compared advances in sequencing to advances in microelectronics. Lately there have been many claims, including by the National Human Genome Research Institute (NHGRI), that genomics is outpacing developments in computing as measured by Moore's law - the notion that computers double in processing capability per dollar spent every 18-24 months. Celebrations of the "$1000 genome" and other speed-related sequencing milestones might be dismissed as a distraction from genomics' slowness in delivering clinical breakthroughs, but the fact that such celebrations have been persistently encouraged by the NHGRI reveals a great deal about the priorities and expectations of the American general public, the intended audience of the genomics-computing comparison. By delving into the history of speculative thinking about sequencing and computing, this article demonstrates just how much more receptive to high-risk/high-payoff ventures the NIH and the general public have become. The article also provides access to some of the roots and consequences of the association of "innovation talk" with genomics, and the means to look past that association to the less glamorous (but arguably much more important) contributions of the NHGRI to building the field of genomics.

Public Funding for Genomics and the Return on Investment: A Public Health Perspective.

This article traces the emergence of lean principles in genomics research and connects this new way of doing science with many of the current pitfalls of precision medicine in its attempts at improving population health outcomes. Precision medicine has a history of public funding, yet the benefits in clinical settings are very slowly being realized due to a variety of factors, such as uncertainty regarding relevant treatments after identifying disease risk, lack of cost-effectiveness studies for general population-level interventions, and letting a culture of "over promise and under deliver" permeate some areas of genomics research. The article concludes with insights into the challenges and opportunities that will need careful consideration and consultation with the wider society in order to decide whether to turn off the "tap" for investment of public funds in research on genomics and other "omics." Ultimately, this article argues for a moderate course correction in how public funds are invested to truly improve the health of all of us, and not just some of us.

Moving beyond Bermuda: sharing data to build a medical information commons.

The ubiquity of DNA sequencing and the advent of medical imaging, electronic health records, and "omics" technologies have produced a deluge of data. Making meaning of those data-creating scientific knowledge and useful clinical information-will vastly exceed the capacity of even the largest institutions. Data must be shared to achieve the promises of genomic science and precision medicine.

Ethical, Legal, and Social Implications of Personalized Genomic Medicine Research: Current Literature and Suggestions for the Future.

PURPOSE: This review identifies the prominent topics in the literature pertaining to the ethical, legal, and social issues (ELSI) raised by research investigating personalized genomic medicine (PGM). METHODS: The abstracts of 953 articles extracted from scholarly databases and published during a 5-year period (2008-2012) were reviewed. A total of 299 articles met our research criteria and were organized thematically to assess the representation of ELSI issues for stakeholders, health specialties, journals, and empirical studies. RESULTS: ELSI analyses were published in both scientific and ethics journals. Investigational research comprised 45% of the literature reviewed (135 articles) and the remaining 55% (164 articles) comprised normative analyses. Traditional ELSI concerns dominated the discourse including discussions about disclosure of research results. In fact, there was a dramatic increase in the number of articles focused on the disclosure of research results and incidental findings to research participants. Few papers focused on particular disorders, the use of racial categories in research, international communities, or special populations (e.g., adolescents, elderly patients, or ethnic groups). CONCLUSION: Considering that strategies in personalized medicine increasingly target individuals' unique health conditions, environments, and ancestries, further analysis is needed on how ELSI scholarship can better serve the increasingly global, interdisciplinary, and diverse PGM research community.

[Synthesizing a human genome?] / HGP-write : après la lecture, l'écriture ? - Chroniques génomiques.

The recently proposed « HGP-write ¼ project aims to synthetize a full human genome and to introduce it into cells. This ambitious endeavour is fraught with financial and technical uncertainties and, if successful, would make « synthetic humans ¼ a definite possibility even though this is not part of its announced goals. Accordingly, it has not been received with enthusiasm.