Tag: risk

Bioethics Blogs

Responsibility in the age of precision genomics

by Alexa Woodward

Alexa is a fellow in the Precision Medicine: Ethics, Policy, and Culture project through Columbia University’s Center for the Study of Social Difference. The following is her reflection on the ongoing discussion around the Precision Medicine Initiative that has been the subject of recent political, social, and popular media attention. A recent presentation by Sandra Soo-Jin Lee, PhD, from the Center for Biomedical Ethics at Stanford University spurred our multi-disciplinary discussion of some of the following themes.

What is normal, anyway?

Genetically speaking, that’s precisely the question that the Obama administration’s Precision Medicine Initiative (PMI) seeks to answer. In recruiting and collecting comprehensive genetic, medical, behavioral, and lifestyle data from one million Americans, the scientific and medical communities will be better able to understand what constitutes normal genetic variation within the population, and in turn, what amount of variation causes or contributes to disease or disease risk.[1] Using this data, researchers could potentially create tailored approaches for intervention and treatment of an incredible range of diseases.

The PMI has a secondary aim: to increase the representation of previously underrepresented populations in research – primarily African Americans and Hispanics/Latinos. Inclusion of these groups in research has been a challenge for decades, with lack of access, distrust in the medical and research systems, and institutionalized racism all playing exclusionary roles. More broadly, outside of the government initiative, the promise of precision medicine ultimately seeks to alleviate disparities by finding and addressing supposed genetic differences, and empowering people with information to take responsibility for their health.

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’s At Stake in Speculation? by Matthew Wolf-Meyer

We’ve long been thinking about health, well-being, illness, sickness, and disease, in relation to risk. That things might not be maintained at their present levels, either individually, among our cared-for, or socially, is not something new, even if we’ve entered a period of intensification, with calls to ‘repeal and replace’ the Affordable Care Act, and the slow, often subtle chipping away at social safety net policies in the United States and throughout the North Atlantic in the spirit of austerity and for the sake of freedom. What might have been primarily personal and interpersonal concerns about health and disease have also expanded to include the environment and the species, as we continue to think through the Anthropocene and its consequences for exposures to environmental dangers – toxins and radiation foremost among them – and the spread of once localized diseases to the global stage, as the recent zika outbreak raised, and Ebola recurrently threatens. The intensification and generalization of risk may very well entail the intensification and generalization of speculation; what are our individual and collective possible futures? And what better way to confront our possible futures than through media that explicitly engages with the future, speculative and science fiction?

Is speculation fundamental to life itself? That’s the question that Steve Shaviro seeks to answer in his recent Discognition. Shaviro argues that sentience itself – which we might see operating in computer programs, plants, slime mold, and emergent technologies – is founded on the existence of the ability to speculate, to anticipate and plan. We may not be able to infer how speculation works for a sentient computer program or a slime mold, yet, they depend upon an ability to forecast, to imagine what may come next, so as to act appropriately in advance.

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

American Zika in 2016 and 2017: The Strange Case of Mr. Hyde and Dr. Jekyll

As North America heads into summer, Peter Hotez, co-Editor-in-Chief of PLOS Neglected Tropical Diseases, discusses the risk for Zika outbreaks and hopes Mr. Hyde doesn’t rear his ugly head. In 1886 Mr. Robert Louis Stevenson published

Source: Speaking of Medicine, blog of the Public Library of Science.

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 in India and Public Health Ethics

Chhanda Chakraborti argues for a more ethically aware public health response to the to Zika in India.

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On May 27, 2017, Indian newspapers reported that the WHO confirmed three cases of Zika virus in Ahmedabad, Gujarat, India. The first case, in November 2016, involved a 34-year-old woman, who tested positive for Zika after she delivered a baby at B. J. Medical College. The second case, in January 2017, involved a a 22-year-old woman in her 37th week of her pregnancy. The third case, in February 2017, involved a 64-year-old man who was identified during a random monitoring and surveillance activity conducted by the B. J. Medical College.

In February 2016, the Minister of Health proclaimed that India’s Ministry of Health and Family Welfare had adopted several actions and countermeasures to prevent the spread of Zika. However, the alerts and guidelines about Zika, that were created in consultation with the World Health Organization (WHO), only became publicly available on the Ministry’s website after media reports of Zika in India. In May 2017, the WHO asserted that India’s Ministry of Health has taken the necessary steps to address the situation. These steps include sharing national plan and guidelines on Zika with the States, setting up an Inter-Ministerial task force, displaying Zika- related information for travellers in the airports.

B. J. Medical College, Ahmedabad

Beyond the media reports and the statements issued by the Ministry and the WHO, there has been little public discussion about Zika in India. The local neighbourhood Ahmedabad, as well as the Ahmedabad Municipal Corporation (which is responsible for public health in the area) reportedly were unaware of the Zika cases until these were publicized by the media. In sharp contrast, there are regular public updates on Dengue and Chikangunya cases in India.

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

National Right to Life Tackles End of Life Medicine

Several sessions at next week’s National Right to Life Conference address end-of-life medicine, including the general session: How to Prevent an Assisted Suicide Roe v. Wade.


Assisted Suicide Battles Rage in Nearly Every State: Is Your State Next?
Mary Hahn Beerworth, Scott Fischbach
The threat of doctor-prescribed suicide is advancing in the states. Moreover, the next Supreme Court nomination could lead to legalization of euthanasia nationwide. Assisting suicide is now legal in California, Oregon, Washington, Vermont, and, via the courts in Montana. With battles raging in states
across the country, the ongoing battle in Vermont will be discussed as will other battles nationwide. This workshop will give background and break open the myths surrounding doctor-prescribed suicide. The speakers will cover the current legal and legislative landscape, describe some different kinds of successful winning (and losing strategies), and talk about what you can do in your own state. In the wake of massive state legislative push and upcoming Supreme Court nominations, it is more important than ever that doctor-prescribed suicide be stopped in its tracks.


The Battle Against Simon’s Law: How Dirty Tricks Lost To Smart Negotiations
Kathy Ostrowski
When hospitals choose to fight against parental decision-making rights – the battle for life can take two paths, and only one leads to life. This workshop will provide a firsthand account of those who fought for Simon’s Law in Kansas. Simon’s Law is a very significant pro-life measure that combats selectively “rationed” care and medical discrimination against children with life-limiting diagnoses.  Kathy Ostrowski will share how the triumph of artful dialogue beat back bullying tactics and whisper campaigns.

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

A Clinic Mix-Up Leaves Pregnant Woman In Dark About Zika Risk

June 21, 2017

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Andrea Pardo, 33, of Issaquah, Wash., was tested for the virus in October, after becoming pregnant while living in Mexico. The results were ready by December, but Pardo wasn’t notified until April — 37 weeks into her pregnancy, just before she delivered her daughter, Noemi.

So far, the baby appears healthy. But the delay, blamed on a mistake at the University of Washington clinic where Pardo received care, deprived her of the chance to make an informed choice about her pregnancy, she said.

“Nothing would have changed for me,” she said. “But if I had found out around 20 weeks, I guess I could have made some decisions there.”

Dr. Timothy Dellit, a UW Medicine infectious-disease expert, told Kaiser Health News he called Pardo to explain the error.

… Read More

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Source: Bioethics Bulletin by the Berman Institute of Bioethics.

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

Targeted Killing and Black Boxes

Written By Mitt Regan and Michael Robillard

            Various aspects of the US targeted killing program have attracted considerable attention and some criticism in philosophy and international law. One important aspect of the program that deserves more attention is how targeted killing reflects how the growing number of conflicts involving non-state actors are eroding conventions regarding the use of violence.  Those conventions are based on the paradigm of conflict between states waged by uniformed armed forces on segregated battlefields.  In such conflicts, an individual’s status as a member of the armed forces makes him/her liable to lethal force without examining his/her specific conduct.  Non-state actors, however, do not wear uniforms and seek to be indistinguishable from civilians.  What, then, should be the basis for their liability?

While the traditional paradigm is based on status, it contains implicit assumptions about liable conduct.  These are that: (1) an individual in uniform poses a threat and (2) he voluntarily wears a uniform knowing this.  Voluntarily posing a threat is thus the implicit moral basis for liability on the traditional view of jus in bello. International law stipulates that this condition is met for someone in uniform.  Conflicts with non-state actors, however, require that we make this determination for each individual.  The debate over targeting killing vividly highlights that there is no consensus on what behaviour satisfies this condition aside from overt hostility.  In other words, we lack an accepted convention for determining liability to lethal force absent explicit demonstrations of hostile intent.

Seen in this light, the controversy over the US targeted killing program reflects a debate over what this convention should be.

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

Stakes of Life: Science, states, policies, publics and ‘the first thousand days’ by Fiona C. Ross

Welcome back to the “First Thousand Days of LifeSomatosphere series. Here we continue to explore the ways that a global health initiative driven by new findings in epigenetics and neuroscience and by a reframing of theories about health and disease in terms of developmental origins shape ideas about (global) health and population futures, invigorate campaigns, and take form and settle in localized contexts. Understanding the links between science, biomedicine, policy, population, well-being and relationship as simultaneously both meshed and contingent, our series posits questions about what affordances and limitations lie in new modalities of understanding human illness and well-being. It examines how policy is made and with what effects for its recipients, how states are implicated in health and its others, what forms of the everyday materialize under the lens of new findings in epigenetics and epidemiology, what modalities of knowing emerge and how they settle with older forms, and how ethnography might contribute.

Describing the research programme driven by the Thousand Days research group at the University of Cape Town, I noted that,

The emergent field both synergises a range of disciplines in the bio- and social sciences and develops new sites of humanitarian intervention, reframing current debates about population, well-being and ‘the best interests of the child’ in newly biological ways. As these findings are taken up in policy and practice, we are witnessing the making of a social object with material effects’ (www.thousanddays.uct.ac.za).

Our project has explored that making, its prior conditions and its effects.  As Michelle Pentecost noted in her opening to the Somatosphere series, the framing ‘offers fertile ground for careful thought about contemporary concepts of life, life-giving and care, offering spaces for critically assessing not only how states and people understand and enable health and well-being but also how life is conceptualized by different disciplines.’  We have traced both the ways that medical and scientific knowledge about life come to be interpolated in everyday worlds and the ways that people engage with, respond to – or indeed, ignore and subvert – it as they grapple with the possibilities that reproductive worlds afford.

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 Crisis of Our Era: Can we find a way to talk about it?

So much of the fate of our planet, the human race, and all of God’s creatures depends on humans having an objective, causal understanding of the pressing problems we face and then, on that basis, developing some reasonably effective practical means by which those threats can be ameliorated—it’s called, using human intelligence and being connected to reality, at least reality with a small “r”, as in empirical reality. Just think of the causes of threats such as climate change, transmittable diseases and drug resistant viruses, gun violence, drug abuse, hunger, unemployment, poverty, lack of healthcare coverage, and on and on. Without reasonably sound knowledge of the causes of these threat humans are rendered helpless and vulnerable. And even with sound knowledge, without a practical, yes political, means, in the form of sound public policy, of collective action, to ameliorate them, we are cannot take meaningful action, and are still rendered helpless and vulnerable. Currently, in the United States there is vast disagreement not only over how best to formulate policy solutions to some our most pressing problems, there is often no agreement over how to understand the problem or even whether or not a problem exists. Climate change and gun control are two prominent examples. 

The fact that climate change is real and greatly accelerated by human activity is a fact about which there is clear scientific evidence. Practically all scientific societies, science academies, and governmental and intergovernmental agencies, are in complete agreement, which means the evidence for this empirical claim being true is about as compelling as anything we know about the natural phenomena.

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 Crisis of Our Era: Can we find a way to talk about it?

So much of the fate of our planet, the human race, and all of God’s creatures depends on humans having an objective, causal understanding of the pressing problems we face and then, on that basis, developing some reasonably effective practical means by which those threats can be ameliorated—it’s called, using human intelligence and being connected to reality, at least reality with a small “r”, as in empirical reality. Just think of the causes of threats such as climate change, transmittable diseases and drug resistant viruses, gun violence, drug abuse, hunger, unemployment, poverty, lack of healthcare coverage, and on and on. Without reasonably sound knowledge of the causes of these threat humans are rendered helpless and vulnerable. And even with sound knowledge, without a practical, yes political, means, in the form of sound public policy, of collective action, to ameliorate them, we are cannot take meaningful action, and are still rendered helpless and vulnerable. Currently, in the United States there is vast disagreement not only over how best to formulate policy solutions to some our most pressing problems, there is often no agreement over how to understand the problem or even whether or not a problem exists. Climate change and gun control are two prominent examples. 

The fact that climate change is real and greatly accelerated by human activity is a fact about which there is clear scientific evidence. Practically all scientific societies, science academies, and governmental and intergovernmental agencies, are in complete agreement, which means the evidence for this empirical claim being true is about as compelling as anything we know about the natural phenomena.

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.