Tag: human genome project

Bioethics Blogs

We Can and Must Rebuild the Bridges of Interdisciplinary Bioethics

by Darryl R. J. Macer

This editorial is made available on bioethics.net. The editorial along with the target article and open peer commentary is available via tandfonline.com

Although we can argue that bioethics is holistic and found in every culture, and still alive among people of many indigenous communities as well as the postmodern ones, the academic discipline of bioethics as interpreted by many scholars has attempted to burn bridges to both different views and to persons with different life trajectories and training. The bridges between different cultural and epistemological foundations of bioethics have also been strained by the dominance of Western paradigms of principlism and the emergence of an academic profession of medical bioethics.

This editorial reacts to the points made in the article by Lee, “A Bridge Back to the Future: Public Health Ethics, Bioethics, and Environmental Ethics.” This issue of the American Journal of Bioethics (AJOB) includes a number of commentaries on this theme, and challenges readers to reconsider the manner in which they conceive of bioethics, as well as the range of literature and scholars that they consider to as legitimate sources of wisdom. Such a new approach will not only breathe fresh light into the important work of all scholars, students, and teachers, but also offer some fresh references for contemporary policy changes that face us. Let us approach these issues like an ostrich who is taking her head out of the sand after some years of monodisciplinary focus. To be clear, Lee and some others writing here have apparently not had their head in the sand, as the interrelatedness of health and the environment is clear through the examples shared.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Psst, The Human Genome Was Never Completely Sequenced

Some scientists say it should be. “As a matter of truth in advertising, the ‘finished’ sequence isn’t finished,” said Eric Lander, who led the lab at the Whitehead Institute that deciphered more of the genome for the government-funded Human Genome Project than any other. “I always say ‘finished’ is a term of art.”

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Pioneering Geneticist Explains Ambitious Plan to “Write” the Human Genome

October 27, 2016

(JAMA) – As part of his 1984 doctoral thesis, Church developed and described the first direct DNA sequencing method that became the precursor to modern-day next-generation sequencing approaches. Church was involved in launching the Human Genome Project and received 1 of its first grants. In 2013, his laboratory was 1 of 2 that described human genome editing using CRISPR-Cas9. More recently, he’s been working on genome-scale engineering of Escherichia coli—proof-of-concept for HGP-write. As the project moves forward, Church said his laboratory will develop and test innovations like generating transplantable organs from altered stem cells.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

7 Highlights from Nuffield Council

The UK Nuffield Council on Bioethics’ recently released report, Genome Editing: an ethical review  (full version available here) is the most substantial and thorough assessment of its kind. It delves deeply into the ethical, social, and political underpinnings and implications of genome editing, and touches on related, converging technologies including synthetic biology, gene drives, and de-extinction. A second report with ethical guidance regarding the use of genome editing for human reproduction is due in early 2017 from a Council working group chaired by Karen Yeung

This first report will be an important reference for people across disciplines for some time, and I will not do justice to its scope and breadth here. However, I want to draw attention to just seven concepts that are particularly helpful and illuminating, as much for their framing of the questions at stake as for their content. I briefly summarize each point, and select key quotes from the report.

1. On emerging technology and innovation

Contrary to frequent assumptions, innovation in science and technology is neither linear, autonomous, nor pre-destined. It is continuously co-produced in relation to a complex intersection of actors, institutions, market-drivers, and serendipity. Momentum and sunk costs can however encourage adherence to certain technological pathways, meaning the choice of paths we take should not be undertaken blindly, or lightly.

“A commonplace but now largely discredited perspective viewed science as a resource from which innovators draw, leading to new technological innovations that provide social or commercial benefits, such as increased wellbeing and productivity. The flaws in this ‘linear model’ are generally thought to stem from its failure to give due attention to the complexity of innovation processes, the importance of feedbacks, the role of markets and other actors, and the effects of uncertainty and serendipity.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

In the Journals — September 2016, part II by Aaron Seaman

And, now, part two of September’s journal posting! (Part one is here.)

Medical Anthropology Quarterly

“I Hope I Get Movie-star Teeth”: Doing the Exceptional Normal in Orthodontic Practice for Young People

Anette Wickström

Orthodontics offer young people the chance to improve their bite and adjust their appearances. The most common reasons for orthodontic treatment concern general dentists’, parents’ or children’s dissatisfaction with the esthetics of the bite. My aim is to analyze how esthetic norms are used during three activities preceding possible treatment with fixed appliances. The evaluation indexes signal definitiveness and are the essential grounds for decision-making. In parallel, practitioners and patients refer to self-perceived satisfaction with appearances. Visualizations of divergences and the improved future bite become part of an interactive process that upholds what I conceptualize as “the exceptional normal.” Insights into this process contribute to a better understanding of how medical practices intended to measure and safeguard children’s and young people’s health at the same time mobilize patients to look and feel better. The article is based on an ethnographic study at two orthodontic clinics.

Huichol Migrant Laborers and Pesticides: Structural Violence and Cultural Confounders (open access)

Jennie Gamlin

Every year, around two thousand Huichol families migrate from their homelands in the highlands of northwestern Mexico to the coastal region of Nayarit State, where they are employed on small plantations to pick and thread tobacco leaves. During their four-month stay, they live, work, eat, and sleep in the open air next to the tobacco fields, exposing themselves to an unknown cocktail of pesticides all day, every day.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Maurizio Meloni’s “Political Biology: Science and Social Values in Human Heredity from Eugenics to Epigenetics” by Alan Goodman

Political Biology: Science and Social Values in Human Heredity from Eugenics to Epigenetics

Maurizio Meloni

Palgrave MacMilllan, 2016, 284 pages

 

In Political Biology, Maurizio Meloni, one of our most insightful social theorists of contemporary biology, guides us through heredity from the second half of the nineteenth century, through the twentieth “century of the gene” (Keller, 2000) and into the twenty-first century and the epigenetic present. Meloni expertly maps the consolidation of the paradigm of “hard heredity” that dominates most of the twentieth century. The book invites us to explore the surprising postgenomic world: that is, the world of science that begins roughly after the completion of the Human Genome Project, a period marked by the everyday sequencing of genomes and, of most significance, the opening up of the genome and an increasing appreciation of the complexities by which genetic sequences relate to phenotypes.

Meloni, Senior Research Fellow in the Department of Sociological Studies at the University of Sheffield (UK), examines, on one level, how biological heredity “became modern” when the notion of the gene as controlling fundamental biological processes cemented into the dominant paradigm of biology. On a second level, Meloni investigates the implications of the rise, transformations, and potential decline of hard heredity for social life and political thought. He asks “What sorts of citizenship, personhood, politics and governmentality” are to be found with hard and soft heredity? (ix). What are the connections between views of heredity (and degrees of determinism) and political systems? And on a third level, Meloni highlights the epistemological split between the natural sciences and the social sciences that also became institutionalized during the twentieth century.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Clinical Trials: Sharing of Data and Living Up to Our End of the Bargain

Thinkstock

Today we took a huge step forward in our efforts to make sure that data from biomedical research is shared widely and rapidly. The NIH, in collaboration with our fine colleagues at the U.S. Food and Drug Administration (FDA), and with the valuable input from scientists, patients and other members of the public, has announced the HHS regulation and NIH policy to ensure that information about clinical trials is widely shared. In this blog I want to talk about what this will mean for patients, providers, and researchers. I also want to reflect a bit on how the new regulation and policy fit into our overall efforts to improve clinical trials and data sharing.

Clinical trials are essential for the translation of research advances to new approaches to prevention and treatment. Volunteers who take part in clinical trials often do so with no assurance of personal benefit, but with the expectation that their involvement will add to the growing body of knowledge about health and disease, and thus may help others someday. For that to be realized, all trial results information needs to be publicly reported in a timely fashion—and yet we know that doesn’t always happen. Today’s announcements aim to change that. The HHS regulation issued today, called a “final rule”, describes requirements for registering certain clinical trials and submitting summary results information from these trials to ClinicalTrials.gov, a database managed by NIH’s National Library of Medicine (NLM).

The rule implements the statutory requirements established by Congress for ClinicalTrials.gov to serve as a public source for information about clinical trials.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

The Genome Project — Write

June 3, 2016

(Science) – Although sequencing, analyzing, and editing DNA continue to advance at breakneck pace, the capability to construct DNA sequences in cells is mostly limited to a small number of short segments, restricting the ability to manipulate and understand biological systems. Further understanding of genetic blueprints could come from construction of large, gigabase (Gb)–sized animal and plant genomes, including the human genome, which would in turn drive development of tools and methods to facilitate large-scale synthesis and editing of genomes. To this end, we propose the Human Genome Project–Write (HGP-write).

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

The Secretive ‘Second World’ of Human Synthetic Biology

May 19, 2016

(The Guardian) – By their nature, it is often the most controversial, risky and ethically dubious research programmes that are conducted in secret, curtained-off from society in order to protect knowledge and technology not only from public scrutiny but also espionage or corporate theft. Therefore it should be no surprise that a behind-closed-doors meeting, convened last week at Harvard, on the prospect of synthesising the human genome, has caused a stir. The meeting was convened to discuss the prospects of coordinating a large collaborative venture to follow-up on the Human Genome Project (HGP), that would, over the next decade, seek to construct an entire human genome in a cell line.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Neuroethics and the BRAIN Initiative

By Henry T. Greely

Hank Greely is the Deane F. and Kate Edelman Johnson Professor of Law and Professor, by courtesy, of Genetics at Stanford University. He specializes in ethical, legal, and social issues arising from advances in the biosciences, particularly from genetics, neuroscience, and human stem cell research. He directs the Stanford Center for Law and the Biosciences and the Stanford Program in Neuroscience in Society; chairs the California Advisory Committee on Human Stem Cell Research; and serves on the Neuroscience Forum of the Institute of Medicine, the Advisory Council for the National Institute for General Medical Sciences of NIH, the Committee on Science, Technology, and Law of the National Academy of Sciences, and the NIH Multi-Council Working Group on the BRAIN Initiative. He was elected a fellow of the American Association for the Advancement of Science in 2007. His book, THE END OF SEX AND THE FUTURE OF HUMAN REPRODUCTION, was published in May 2016.

Professor Greely graduated from Stanford in 1974 and from Yale Law School in 1977. He served as a law clerk for Judge John Minor Wisdom on the United States Court of Appeals for the Fifth Circuit and for Justice Potter Stewart of the United States Supreme Court. After working during the Carter Administration in the Departments of Defense and Energy, he entered private practice in Los Angeles in 1981 as a litigator with the law firm of Tuttle & Taylor, Inc. He joined the Stanford faculty in 1985.

On April 2, 2013, President Obama launched the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative®.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.