Tag: normality

Bioethics Blogs

Transferring Embryos with Genetic Anomalies

Jackie Leach Scully argues that respect for equality and diversity, and not just respect for the parental autonomy and the welfare of the future child, should inform policies governing the use of preimplantation genetic diagnosis.

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The Ethics Committee of the American Society for Reproductive Medicine recently published an Opinion on “Transferring embryos with genetic anomalies detected in preimplantation testing.” The Opinion aims to help providers deal with the rare but ethically difficult situation when prospective parents want to transfer embryos with a known genetic anomaly that is linked to a serious health-affecting disorder.

Preimplantation genetic diagnosis (PGD) is typically used by couples to avoid transferring a genetic anomaly to their children. Using PGD to ensure the transfer of a genetic anomaly, rather than avoid it, seems deeply counter-intuitive. Yet, there are several scenarios where this might happen. For example, this might be a reasonable option when the only transferable embryos carry the genetic anomaly, or when the embryos carry a different, but potentially just as serious, genetic variation.

The most problematic cases, however, occur when prospective parents express an actual preference for children with ‘their’ genetic condition – an anomalous condition that others perceive in negative terms. It’s an uncommon situation, but despite its rarity steps have been taken to block attempts by prospective parents to ‘choose disability’, such as the UK’s legislation on reproductive medicine. The legislation prohibits the use of an embryo (or gamete, in the case of egg and sperm donation) that has a genetic anomaly “involving a significant risk” of “a serious physical or mental disability, serious illness, or a serious medical condition” unless there are no other unaffected embryos or gametes that could be used instead.

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 – May 2017 by Livia Garofalo

Please enjoy the article round-up for the month of May! This post was put together in collaboration with Ann Marie Thornburg.

American Ethnologist

Plant matters: Buddhist medicine and economies of attention in postsocialist Siberia

Tatiana Chudakova

Buddhist medicine (sowa rigpa) in Siberia frames the natural world as overflowing with therapeutic potencies: “There is nothing in the world that isn’t a medicine,” goes a common refrain. An exploration of sowa rigpa practitioners’ committed relations with the plants they make into medicines challenges human-centric notions of efficacy in anthropological discussions of healing. Their work of making things medicinal—or pharmacopoiesis—centers on plants’ vital materialities and requires attention to the entanglements among vegetal and human communities and bodies. Potency is thus not the fixed property of substances in a closed therapeutic encounter but the result of a socially and ecologically distributed practice of guided transformations, a practice that is managed through the attentive labor of multiple actors, human and otherwise. In Siberia, pharmacopoiesis makes explicit the layered relations among postsocialist deindustrialization, Buddhist cosmologies, ailing human bodies, and botanical life.

Annals of Anthropological Practice

Special Issue: Continuity and Change in the Applied Anthropology of Risk, Hazards, and Disasters

Disaster vulnerability in anthropological perspective 

A.J. Faas

In the study of disasters, the concept of vulnerability has been primarily employed as a cumulative indicator of the unequal distributions of certain populations in proximity to environmental and technological hazards and an individual or group ability to “anticipate, cope with, resist and recover” from disaster (Wisner et al. 2004). This concept has influenced disaster research as a means to question how natural, temporary, and random disasters are and focused analysis on the human-environmental processes that produce disasters and subject some populations more than others to risk and hazards.

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

Book Forum––Science, Reason, Modernity: Readings for an Anthropology of the Contemporary by Todd Meyers

 

Science, Reason, Modernity: Readings for an Anthropology of the Contemporary is many things — a carefully curated selection of classic texts ranging from Immanuel Kant’s “An Answer to the Question: ‘What is Enlightenment?’” and Max Weber’s “Science as a Vocation,” to Georges Canguilhem’s “The Question of Normality in the History of Biological Thought” and Paul Rabinow’s “Anthropos Today: Reflections on Modern Equipment”; a critical intervention aimed at the core of science studies; an exacting, plowing thesis on the anthropology of the contemporary; and a pedagogical resource crafted for those seeking paths through the briar of scientific method and biological thought (and their historical, social, and philosophical registers).  We hope you enjoy a provocative and engaging set of commentaries.

 

Mediated Experiences: 1-7
Bradley Dunseith + Sean Miller + Antoine Przybylak-Brouillard + Meg Stalcup
University of Ottawa

Canguilhem: the mutual purpose of ethics and science
Monica Greco
Goldsmiths, University of London

The Rabinowian Program
Ferhat Taylan
University of Liege

Forging Links, Surveying Rifts
Cameron Brinitzer
University of Pennsylvania

 

A Reply:

In the Folds of the Contemporary
Gaymon Bennett, Lyle Fearnley & Anthony Stavrianakis
Arizona State University, Singapore University of Technology and Design, CNRS

 

Download the PDF:

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

Slippery Slopes and Biological Curve Balls: Updates on 3-person IVF

In September the world learned of a US fertility doctor who had gone to Mexico where “there are no rules” in order to arrange the birth of a child conceived using 3-person in vitro fertilization (IVF), technically a form of human germline modification, to prevent mitochondrial disease. In October we learned that 3-person IVF is being used experimentally in the Ukraine to treat infertility.

In November we saw four additional important developments:

1) The media got 3-person IVF all wrong

On November 1, Reproductive Biomedicine Online published “Setting the Record Straight,” the journal’s editorial response to the “shoddy scientific journalism” surrounding an article in the very same issue. The article in question was a report on the apparent health of children born in the late 1990s and early 2000s using cytoplasmic transfer, a 3-person IVF precursor (see here for CGS’s take on the media coverage of that article). Published in the immediate aftermath of the Mexico and Ukraine cases, most media reports took it as evidence that current 3-person IVF techniques (pronuclear and spindle transfer) are safe. Railing against this misinterpretation, the editor argues that:

the technique of cytoplasmic transfer in the late 1990s is so different from those of pronuclear or spindle transfer as to make the apparent normality of the offspring born through the former technique of little relevance in the context of (the latter).

In other words, the media got it all wrong—the study doesn’t prove anything about the current or future safety of experimental 3-person IVF techniques.

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 – November by Christine Sargent

Hello trusty readers. Check out November’s haul for “In The Journals,” and be sure to check out the special issue of Science, Technology, and Human Values: Feminist Postcolonial Technosciences.

 

American Ethnologist:

Memory, body, and the online researcher: Following Russian street demonstrations via social media (open access)

Patty A. Gray

The Moscow street demonstrations of 2011–12 were the largest public gatherings in Russia since the collapse of the Soviet Union. They were also the largest-ever gathering of Russians on social media. While using the Internet to follow such large-scale social movements remotely, researchers experience social media as a context in which anthropology happens. They may think about “being there” in new ways that shift their focus to their own processes of memory making and sense of bodily presence. Experiencing and remembering social media in the body challenges the distinctions we might otherwise make between virtual and physical encounters.

Royal pharmaceuticals: Bioprospecting, rights, and traditional authority in South Africa

Christopher Morris

The translation of international biogenetic resource rights to a former apartheid homeland is fostering business partnerships between South African traditional leaders and multinational pharmaceutical companies. In the case of one contentious resource, these partnerships are entrenching, and in some instances expanding, apartheid-associated boundaries and configurations of power. The state and corporate task of producing communities amenable to biodiversity commercialization and conservation is entangled with segregationist laws and spatial planning. Rather than exclusion and the closure of ethnic boundaries, resource rights in this context foreground forced enrollment and the expansion of indigenous group-membership as modes of capitalist accumulation in an extractive economy.

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

Routledge Companion to Philosophy of Medicine

Now available:  the Routledge Companion to Philosophy of Medicine.  This 48 chapter volume is a comprehensive guide to topics in the fields of epistemology and metaphysics of medicine.

PART I: GENERAL CONCEPTS
The concept of disease (Dominic Sisti and Arthur Caplan)
Disease, illness, and sickness (Bjorn Hofmann)
Health and wellbeing (Daniel Hausman)
Disability and normality (Anita Silvers)
Mechanisms in medicine (Phyllis Illari)
Causality and causal inference in medicine (Julian Reiss)
Frequency and propensity: The interpretation of probability in causal models for medicine (Donald Gillies)
Reductionism in the biomedical sciences (Holly Andersen)
Realism and constructivism in medicine (Jeremy R. Simon)

PART II: SPECIFIC CONCEPTS
Birth (Christina Schuees)
Death (Steven Luper)
Pain and suffering (Valerie Gray Hardcastle)
Measuring placebo effects (Jeremy Howick)
The concept of genetic disease (Jonathan M. Kaplan)
Diagnostic categories (Annemarie Jutel)
Classificatory challenges in psychopathology (Harold Kincaid)
Classificatory challenges in physical disease (Mathias Brochhausen)

PART III: RESEARCH MEDICINE
(a) Evidence in Medicine
The randomized controlled trial: internal and external validity (Adam La Caze)
The hierarchy of evidence, meta-analysis, and systematic review (Robyn Bluhm)
Statistical evidence and the reliability of medical research (Mattia Andreoletti & David Teira)
Bayesian versus Frequentist clinical trials (Cecilia Nardini)
Observational research (Olaf Dekkers & Jan Vandenbroucke)
Philosophy of epidemiology (Alex Broadbent)
Complementary/alternative medicine and the evidence requirement (Kirsten Hansen & Klemmens Kappel)
b. Other Research Methods
Models in medicine (Michael Wilde & Jon Williamson)
Discovery in medicine (Brendan Clarke)
Explanation in medicine (Mael Lemoine)
The case study in medicine (Rachel Ankeny)
Values in medical research (Kirstin Borgersen)
Outcome measures in medicine (Leah McClimans)
Measuring harms (Jacob Stegenga)
Expert consensus (Miriam Solomon)

PART IV: CLINICAL METHODS
Clinical judgment (Ross Upshur & Benjamin Chin-Yee)
Narrative medicine (Danielle Spencer)
Medical decision making: diagnosis, treatment, and prognosis (Ashley Graham Kennedy)

PART V: VARIABILITY AND DIVERSITY
Personalized and Precision Medicine (Alex Gamma)
Gender in Medicine (Inmaculada de Melo Martin & Kristin Intemann)
Race in Medicine (Sean Valles)
Atypical bodies in medical care (Ellen Feder)

PART VI: PERSPECTIVES
The biomedical model and the biopsychosocial model (Fred Gifford)
Models of mental illness (Jacqueline Sullivan)
Phenomenology and hermeneutics in Medicine (Havi Carel)
Evolutionary Medicine (Michael Cournoyea)
Philosophy of Nursing: caring, holism and the nursing role(s) (Mark Risjord)
Contemporary Chinese medicine and its theoretical foundations (Judith Farquhar)
Double truths and the postcolonial predicament of Chinese medicine (Eric Karchmer)
Medicine as a commodity (Carl Elliott)

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

The 2016 Kavli Futures Symposium: Ethical foundations of Novel Neurotechnologies: Identity, Agency and Normality

By Sean Batir (1), Rafael Yuste (1), Sara Goering (2), and Laura Specker Sullivan (2)
Image from Kavli Futures Symposium

(1) Neurotechnology Center, Kavli Institute of Brain Science, Department of Biological Sciences, Columbia University, New York, NY 10027

(2) Department of Philosophy, and Center for Sensorimotor Neural Engineering, University of Washington, Seattle, WA 98195

Detailed biographies for each author are located at the end of this post

Often described as the “two cultures,” few would deny the divide between the humanities and the sciences. This divide must be broken down if humanistic progress is to be made in the future of transformative technologies. The 2016 Kavli Futures Symposium held by Dr. Rafael Yuste and Dr. Sara Goering at the Neurotechnology Center of Columbia University addressed the divide between the humanities and sciences by curating an interdisciplinary dialogue between leading neuroscientists, neural engineers, and bioethicists across three broad topics of conversation. These three topics include conversations on identity and mind reading, agency and brain stimulation, and definitions of normality in the context of brain enhancement. The message of such an event is clear: dialogue between neurotechnology and ethics is necessary because the novel neurotechnologies are poised to generate a profound transformation in our society.

With the emergence of technology that can read the brain’s patterns at an intimate level, questions arose about the implications for how these methods could reveal the core of human identity – the mind. Jack Gallant, from UC Berkeley, reported on a neural decoder that can identify the visual imagery used by human subjects (1).

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

Zombethics 2016: (in)visible disabilities and troubling normality

By Shweta Sahu
Zombethics Case Graphic 

With Halloween just around the corner, zombies and other atypical creatures are much on our minds, but such constructs are rarely thought of from an ethical perspective. This year, on October 26th at 5:30 pm at the Center for Ethics, 1531 Dickey Drive, Ethics Commons Room 102, Emory Center for Ethics is collaborating with Emory Integrity Project (EIP) to boggle your mind with ethical considerations and encourage you to consider how students should engage across (in)visible differences at Emory. The discussion will be based around three interesting case studies which can be found here. These scenarios will lead to questions such as, ‘should people ask others what gender pronouns they prefer to be associated with, even if the answer may seem “obvious” at first glance.’ On the other hand, what are the implications of assuming non-visible disability based on a person’s behaviors or appearance? The goal of the symposium will be to help participants handle controversial issues like these and to guide them to effectively deal with such situations.

To find out more about the event, I spoke with coordinator Dr. Paul Wolpe from the Emory Center for Ethics as well as Ms. Emily Lorino and Dr. Rebecca Taylor from the Emory Integrity Project, and Dr. Karen Rommelfanger, chair of the Zombethics®conference series. Here’s what I asked:

In your own words, what do you think ZombethicsTM is/ what does it represent?
According to Dr. Wolpe, “through history there have been portrayals of people with deformities and grotesque faces that are cast as alien and “other”, and against whom we measure our own humanity… we use either real or imagined monsters to try to understand the nature of what it means to be human and contrast ourselves by and against.

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

What is a moral epigenetic responsibility?

Guest Post: Charles Dupras & Vardit Ravitsky

The ambiguous nature of epigenetic responsibility

Epigenetics is a recent yet promising field of scientific research. It explores the influence of the biochemical environment (food, toxic pollutants) and the social environment (stress, child abuse, socio-economic status) on the expression of genes, i.e. on whether and how they will switch ‘on’ or ‘off’. Epigenetic modifications can have a significant impact on health and disease later in life. Most surprisingly, it was suggested that some epigenetic variants (or ‘epi-mutations’) acquired during one’s life could be transmitted to offspring, thus having long-term effects on the health of future generations.

Epigenetics is increasingly capturing the attention of social scientists and ethicists, because it brings attention to the importance of environmental exposure for the developing foetus and child as a risk factor for common diseases such as cardiovascular, diabetes, obesity, allergies and cancers. Scholars such as Hannah Landecker, Mark Rothstein and Maurizio Meloni have argued that epigenetics may be used to promote various arguments in ongoing debates on environmental and social justice, as well as intergenerational equity. Some even suggested that epigenetics could lead to novel ways of thinking about moral responsibilities for health.

Is it fair that disadvantaged populations are exposed to an inequitable share of harmful environments – such as polluted areas – that are epigenetically-detrimental to their health? Who should be held responsible for protecting children and future generations from epigenetic harm induced by their environments? Should we hold the parents accountable for detrimental epigenetic impact of their behavior on their children?

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.