Tag: medical genetics

Bioethics Blogs

Some Comments about Being a Philosopher of Color and the Reasons I Didn’t Write a (Real) Paper for this (Seemingly) Ideal Venue for my Work

by Sean A. Valles

ABSTRACT. This special issue conspicuously lacks work by Philosophers of Color (with the exception of this commentary). I have been given this opportunity to discuss the impediments that kept me from submitting my relevant work, offered as a small step toward recognizing the impediments faced by other Philosophers of Color. I highlight factors including direct and indirect consequences of a disproportionately White community of US philosophers, and some underrecognized risk-reward calculations that Philosophers of Color face when choosing an article project. I urge further discussion of the topic, starting with an exhortation to choose the right phenomenon and accordingly frame the right question: Why are White philosophers deliberating the “ethical and social issues arising out of the 2016 US presidential election” in a prestigious journal, while Philosophers of Color are deliberating the same issues in tense classrooms, closed offices, and on-/off-campus forums?

This is not a real article. But in this special issue on the 2016 US election and Trump it is, to my knowledge, the only contribution written by a Philosopher of Color. It is a commentary about the fact that it is the only contribution written by a Philosopher of Color.

After Editor-in-Chief Rebecca Kukla expressed consternation that the issue was full of excellent papers, but written by a roster of White philosophers, I offered to say something about why I didn’t submit any of my relevant philosophical work (on nativism, racism, health policy, Latinx health, etc.), and why it didn’t surprise me that almost none of the other well-qualified Philosophers of Color did either.

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

Ethical issues in foetal genome sequencing. New level of complexity to medical, family and social decisions resulting from this prenatal diagnosis

Regardless of the legal judgment that abortion deserves in different countries, any action that may induce or facilitate abortion is ethically unacceptable.

In 2012, a technique was developed that enabled the foetal genome to be determined in the first trimester of pregnancy, using a small sample of the mother’s blood (Nature 2012, 487,320-4. Erratum Nature 2012; 489,326). This attractive novel technique has opened up new medical possibilities, but also objective ethical questions. A recent article published in the New England Journal of Medicine (370; 195-197) discussed this topic.

There is no doubt that this new possibility adds a new level of complexity to medical, family and social decisions resulting from prenatal diagnosis.

As discussed in the article, information can be obtained on some foetal medical issues with the usual methods, such as chorionic villus sampling or amniocentesis. With genomic analysis however, information can not only be obtained on possible diseases, but also on types of autosomal recessive diseases (e.g. Tay-Sachs disease), or the risk that the future child will develop a disease such as diabetes or some type of cancer in adulthood, especially breast and ovarian cancer in women. Knowing the risks of future diseases can be used for the good of the foetus, if prenatal treatments can be applied, but also against their life if abortion is favoured.

This therefore raises several ethical questions, such as, “Should foetal genome studies be routinely offered to everyone?” or “Are parents entitled to know their future child’s genetic information?” One criterion that is probably essential to establish the ethicality of these practices, is that they are always used in the best interests of the child.

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

Genome sequencing in foetal .This prenatal diagnosis arrises a new level of complexity to medical, family and social decisions

Regardless of the legal judgment that abortion deserves in different countries, any action that may induce or facilitate abortion is ethically unacceptable.

In 2012, a technique was developed that enabled the foetal genome to be determined in the first trimester of pregnancy, using a small sample of the mother’s blood (Nature 2012, 487,320-4. Erratum Nature 2012; 489,326). This attractive novel technique has opened up new medical possibilities, but also objective ethical questions. A recent article published in the New England Journal of Medicine (370; 195-197) discussed this topic.

There is no doubt that this new possibility adds a new level of complexity to medical, family and social decisions resulting from prenatal diagnosis.

As discussed in the article, information can be obtained on some foetal medical issues with the usual methods, such as chorionic villus sampling or amniocentesis. With genomic analysis however, information can not only be obtained on possible diseases, but also on types of autosomal recessive diseases (e.g. Tay-Sachs disease), or the risk that the future child will develop a disease such as diabetes or some type of cancer in adulthood, especially breast and ovarian cancer in women. Knowing the risks of future diseases can be used for the good of the foetus, if prenatal treatments can be applied, but also against their life if abortion is favoured.

This therefore raises several ethical questions, such as, “Should foetal genome studies be routinely offered to everyone?” or “Are parents entitled to know their future child’s genetic information?” One criterion that is probably essential to establish the ethicality of these practices, is that they are always used in the best interests of the child.

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

ACMG Urges Caution When Editing Embryo Genomes

January 31, 2017

(The Scientist) – The board of directors of the American College of Medical Genetics and Genomics (ACMG) released a statement last Thursday outlining their concerns about genome editing technologies in Genetics in Medicine (January 26). “Genome editing offers great promise for the future treatment of individuals and families with genetic disorders,” the authors write, “but also raises major technological and ethical issues that must be resolved before clinical application.”

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

Review of Blame: A Novel

Because it is a central theme of this novel, it seems appropriate for me to start this review with my own “conflict of interest” – or as I prefer to see it, my “competing interest.” So I note that my parents and Tony’s parents were friends when we were young children and though he and I were never friends, we were colleagues in adulthood insofar as we attended the same medical/human genetics meetings and conferences and kept in touch with our separate critiques of these issues, even discussing them, when we met.

Readers, therefore, can make their own assessments of my comments about Blame as to whether or not they are “fair” or even unbiased. Readers should also know that though I have a long history of writing and publishing book reviews, both in print and online, with only one exception these have been works of non-fiction; critiquing a novel is something I vowed not to do once the first was complete, but here I am….

Enough about me; the book is what is important here, and it is an important book – especially for those who are not trained in or otherwise familiar with human/medical genetics and the range of ethical, social, legal, and political issues raised by the applications of what is learned in a lab. It is a novel of fiction and a novel of science, often eerily portraying not only what is happening now but what is possibly very soon to come as new technologies are normalized, “monetized,” and enter “ordinary” medical practice.

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

Special Issues: Psy Sciences and Healthism by Anna Zogas

In advance of our regular monthly journal round-up, here are two special issues to check out! First, the brand new June 2016 issue of East Asian Science, Technology and Society is titled Transnational Psy Sciences in East and Southeast Asia. Next, a special double issue of Eä – Journal of Medical Humanities & Social Studies of Science and Technology (open access) is titled Healthism & Self-Care: Reconfiguring Body & Life through Science & Technology. Enjoy!

East Asian Science, Technology and Society

Transnational Psy Sciences in East and Southeast Asia

From the 1970s onward, the psy sciences were witness to blustering confrontations from a New Age movement heavily informed by Asian philosophy. Nowadays, yoga practices and mindfulness training have been integrated into mainstream psychotherapy. Nevertheless, such trends toward East-West admixing are in fact not at all new. Through four case studies, this special issue provides empirical data complementing the abundance of new scholarship on the history of psy sciences in East and Southeast Asia.

Making and Mapping Psy Sciences in East and Southeast Asia (open access)
Harry Yi-Jui WuWen-Ji Wang

The rich history of psy disciplines or psy sciences (psychology, psychiatry, psychotherapy, psychoanalysis) in modern society has been subject to different and sometimes conflicting interpretations. Major events, theories, and figures have been recorded and the meaning of their contributions explored to illustrate the ways in which various forms of psychological knowledge become important sources of self-understanding and self-actualization. Insights into the social and cultural history of psy sciences enable us to understand the interconnection between forms of knowledge and the social order to which they relate (Eghigian et al.

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

Genetics: On the Heredity Trail

May 12, 2016

(Nature) – In 2011, Siddhartha Mukherjee won a Pulitzer prize for The Emperor of All Maladies (Scribner, 2010), which intertwined science and his own experience as an oncologist. In The Gene, Mukherjee uses a personal approach to describe our understanding of heredity. Despite its subtitle (‘An Intimate History’), the historical sections of The Gene, ranging from 1860 to the present, are not intended to show the convoluted route to current knowledge. They are primarily a tool for explaining the basics of medical genetics.

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

Zika: An opportunity to improve pre-conception care.

by Andrea L. Kalfoglou, Ph.D.

The Zika virus is spreading rapidly throughout parts of South and Central America. Public health officials are concerned because there is a correlation between the emergence of the Zika virus and a dramatic increase in number of babies born in Brazil with a severe birth defect called microcephaly.

The CDC has warned women from the U.S. who are pregnant or thinking about becoming pregnant not to travel to certain areas in Central and South America. Additionally, infectious disease specialists are concerned that Zika may adapt to transmission by a type of mosquito common in 32 states in the U.S.

There is no commercial test available to diagnose Zika; however, there are testing protocols available through the CDC and some state health departments.

According to Francis Collins, Director of the National Institutes of Health, researchers are working to develop a diagnostic test that could be widely available. If such a test becomes available, pregnant women may seek out this test to determine whether they have been infected. Additionally, because microcephaly is such a severe birth defect, women considering pregnancy may begin to request diagnostic testing for Zika. This consumer-driven demand for pre-conception testing could create a window of opportunity to improve delivery of pre-conception care should primary-care providers seize on this opportunity.

Pre-conception care is not routinely provided to women of reproductive age. Primary-care providers have said this is because women do not seek out this care and primary-care providers do not have time to provide this care given all of the competing health-prevention needs.

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

Top of the Heap: Elizabeth Lewis by Hannah Gibson

For this installment of the Top of the Heap series, I spoke with Elizabeth Lewis, who is a doctoral candidate in anthropology at the University of Texas at Austin, as well as a disability writer, blogger, and advocate.

Elizabeth Lewis

For several months now, I’ve been thinking about the relationship between ethnography, narrative nonfiction, and fiction, and the possibilities for navigating between those genres ethnographically. I am in the process of weaving together several overlapping projects on rare and undiagnosed disabilities in the U.S., and my current writings explore how diagnoses animate everyday life and unsettle historical understandings of disability-as-difference. It sounds clear enough, yet I’ve been plagued by nagging questions of form and voice, as well as function and translatability. As always, I turned to my bookshelf for answers.

My booklist these days centers on three categories: popular writings on disability, ethnographies, and an additional “Other” group consisting mostly of works from disability studies and the history of medicine. I just started Nathaniel Comfort’s The Science of Human Perfection, a fascinating exploration of the history of medical genetics and eugenics in the U.S. My research focuses on undiagnosed disabilities and, for this population, genetic technologies can be a critical tool for obtaining diagnostic information that was unimaginable in the recent past. What do genetic explanations do and mean for disability populations that are so small, sometimes with only one or a handful of cases of a particular syndrome known worldwide? How does this new knowledge potential intersect with the complex history of eugenics and disability?

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 (Part 2) by Melanie Boeckmann

Health, Risk & Society

Towards a better understanding of risk-taking: key concepts, dimensions and perspectives

Jens O. Zinn

The current study of risk is dominated by the risk minimisation approach that frames risk and risk-taking as something undesirable that should be avoided as much as possible. However, this approach to risk often fails to consider the broader conditions and motivations of risk-taking and to examine why people expose themselves to danger. In this editorial, I explore two key concepts – voluntary risk-taking and risk behaviour – considering the ways in which they represent opposing views in risk studies. I make the case for a broader approach to ‘risk-taking’ that addresses the complex tensions between risk-taking and risk aversion in the social, natural and material contexts of everyday life. I examine how risk-taking is characterised by varying degrees of control over decision-making, different mixes of motives, the impact of socio-structural factors, forms of routinisation and habitual risk-taking, how power is involved in risk-taking and how identity is used to challenge experts’ views. I discuss the role of stigma in risk-taking and how general societal contexts and organisational cultures influence the risk-taking. While there is increasing research on risk-taking, there is still scope for further publications that will advance our understanding of risk-taking in its social contexts, and in this editorial, I address issues that will form the basis of a forthcoming special issue of Health, Risk & Society.

‘Fuzzy’ virus: indeterminate influenza biology, diagnosis and surveillance in the risk ontologies of the general public in time of pandemics

Davina Lohm, Mark Davis, Paul Flowers & Niamh Stephenson

Influenza viruses are radically uncertain, leading to scientific and procedural challenges for diagnosis and surveillance and lending influenza symptoms a high degree of indeterminacy.

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.