Tag: government

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American CRISPR Experiments and the Future of Regulation

By Michael S. Dauber, MA, GBI Visiting Scholar

According to a report in The MIT Technology Review, researchers in a lab based in Portland, Oregon have successfully created genetically modified human embryos for the first time in U.S. history, using a technique called CRISPR. The project, directed by Shoukhrat Mitalipov, a researcher at Oregon Health and Science University, was published in Nature, and consisted of modifying the genes of human embryos to prevent a severe, genetically inherited heart condition. The embryos were destroyed several days after the experiments.

CRISPR stands for “clustered, regularly interspaced, short palindromic repeats.” It is a genetic editing technique that allows scientists to cut out pieces of DNA and replace them with other pieces. CRISPR originated as a naturally occurring cellular defense system in certain bacterial that allows a cell to defend itself from foreign genetic material injected into cells by viruses. RNA strands that match the problematic genes bind with the piece of DNA to be removed, and enzymes work to remove the defective material. When CRISPR is used to edit the human genome, scientists apply CRISPR RNA strands and the corresponding enzymes that match the genes they wish to edit in order to extract the problematic genes.

Mitalipov is not the first scientist to use CRISPR to edit the human genome. Scientists in China have been using the technique in research using human embryos dating back to 2015. One notable study consisted of attempts to make cells resistant to HIV. Another controversial study involved the injection of CRISPR-modified cells into a patient with advanced lung cancer.

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.

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Things Which Have Once Been Conjoined: Science Fiction, Contagion, and Magic in the Age of Social Media by Samuel Gerald Collins

There are many interesting formations that might be called networked phenomena. Homophily and the tendency towards triad closure. Scott Feld’s Rule (I’m more likely to make friends with someone who has more friends than me). Small world phenomena (those 6 degrees of separation). “The Strength of Weak Ties” (reportedly the most cited sociology paper in history). In all, a series of social forms that complicates typical binarisms like individual versus group.

All of these have their positive and negative sides, but few networked phenomena have been met with more ambivalence than that of contagion, the idea that things (memes, viral videos, fashion) spread from person to person in a way that is similar to an epidemic; that is, people believe certain things or participate in certain behaviors without necessarily having “decided” to do so. Instead, the chances of “contracting” an idea, a fashion, or a new technology come down to the structural position in a network—a question, for example, of k-threshold models, where the chance of contagion depends upon the topology of connections vis-à-vis other infected nodes.

Given its identification with epidemiological contagion, it is not surprising that social contagion brings with it a negative valence, conjuring up fears of loss of autonomy, of being reduced to “hosts” for the “viral” propagation of information in a network. Contagion is at the heart of the fear and fascination of the zombie. It is also part of the latest panic in politics, one that centers on a vision of an electorate easily manipulated through fake news propagated through social media.

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.

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In a Nutshell II: Ontario Court Decision & MAiD

Jocelyn Downie describes the recent Ontario Superior Court of Justice decision in A.B. v. The Attorney General of Canada and the Attorney General for Ontario, which provides an interpretation of “reasonably foreseeable natural death” within the Canadian federal legislation on medical assistance in dying (MAiD).

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On June 17, 2016, new Canadian federal legislation on medical assistance in dying (MAiD) came into effect. The legislation was the government’s response to the Supreme Court of Canada’s decision in Carter v. Canada striking down the Canadian Criminal Code prohibitions on medical assistance in dying. The legislation established eligibility criteria for access to medical assistance in dying (e.g., competent adult) as well as procedural safeguards (e.g., a ten day waiting period between the initial request for medical assistance in dying and the provision).

On June 19, 2017, almost a year to the day after the legislation came into effect, a judge in Ontario issued the first decision to provide an interpretation of one of the most confusing and controversial elements of that legislation.

The Act to amend the Criminal Code and to make related amendments to other Acts (medical assistance in dying) establishes that individuals are only allowed access to medical assistance in dying if, among other things, “their natural death has become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to the specific length of time that they have remaining.” (s.241.2(2)(d)) But what does it mean to say that a natural death is “reasonably foreseeable”?  Does this mean, as various government statements and documents have suggested, that the person is on “an identifiable path” to natural death or that the person’s natural death is “not too remote” or is “in the not too distant future”? 

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.

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When Women are Surrogate Mothers: Is that work?

Alana Cattapan, Angela Cameron, and Vanessa Gruben warn that speaking about “compensation” is a way of avoiding difficult conversations about payment to surrogates.

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A recent Canadian Medical Association Journal (CMAJ) news article reported that the Canadian Fertility and Andrology Society (CFAS) has called for the federal government to reconsider the ban on payment for surrogacy in Canada. The article suggests that industry professionals and academics alike are coming around on compensation for surrogacy, with support growing all the time.

In Canada, payment for surrogacy, egg donation, and sperm donation is banned under the 2004 Assisted Human Reproduction Act. Under the Act, surrogates (like egg donors and sperm donors) can be reimbursed for receipted expenses. With a note from their doctor, surrogates can also receive some money for lost work-related income during pregnancy.

The Act states that this reimbursement of expenses must follow the relevant regulations. Until now, however, these regulations have never been drafted. After more than a decade, Health Canada is now in the throes of making them. This is occurring as surrogacy in Canada is expanding to accommodate more and more people from countries where surrogacy is more expensive, harder to access or banned completely.

Women Working in a Field by Winslow Homer 1867.

It is in this context that the CFAS (which is a part-medical association, part-industry organization representing the fertility industry and its doctors, lawyers, scientists and ethicists) has called for the government to reconsider the ban on payment.

 It is important to know that the market in surrogacy in Canada is a profitable one.

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.

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The Americans with Disabilities Act: Before and After the Fall

For the past many years, I have publicly and privately acknowledged the July 26th anniversary of the Americans with Disabilities Act. Public recognition of the anniversary was an important part of my role as the Administrator of the Administration for Community Living (ACL), the federal agency that funds a variety of important programs that support people with disabilities and their families. Two years ago, at the 25th anniversary, I attended community and campus events in Lawrence and highlighted the anniversary in Washington, D.C. 
One of my favorite aspects of this annual recognition is the company I keep. Many of the individuals who fought at the local, state and federal level for the civil rights of people with disabilities still walk and roll among us. Over the course of my seven years in Washington and during my time in Kansas state government, I have had the pleasure of meeting and collaborating with some of the strongest advocates for people with disabilities in this country. To know the people who created and fought for the ADA is nothing less than an honor. Many of the leaders in this movement are now my friends.

Blame the Mouse

Beginning in August 2016, the benefits of the Americans with Disabilities Act were made real for me. On August 2nd of last year, I fell from a ladder (blame the dead mouse in my attic) and sustained a serious injury to my right leg. I shattered the top of my tibia and fractured my ankle. I was in the acute care hospital for six days and inpatient rehab for 12.

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.

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End-of-Life Healthcare Sessions at ASBH 2017

The 2017 ASBH
conference
 in October 2017 includes over 400 workshops, panels, and
papers in bioethics and the health humanities.  Here are ones that pertain
to end-of-life issues.


THURSDAY, OCTOBER 19


THU 1:30 pm:  End-of-Life Care and Decision-Making in the ICU – Limited
English Proficiency as a Predictor of Disparities (Amelia Barwise)


Importance: Navigating choices in predominantly English-speaking care settings
can present practical and ethical challenges for patients with limited English
proficiency (LEP). Decision-making in the ICU is especially difficult and may
be associated with disparities in health care utilization and outcomes in critical
care. 


Objective: To determine if code status, advance directives, decisions to limit
life support, and end-of-life decision-making were different for ICU patients
with LEP compared to English-proficient patients. 


Methods: Retrospective cohort study of adult ICU patients from
5/31/2011-6/1/2014. 779 (2.8%) of our cohort of 27,523 had LEP. 


Results: When adjusted for severity of illness, age, sex, education, and
insurance status, patients with LEP were less likely to change their code
status from full code to do not resuscitate (DNR) during ICU admission (OR,
0.62; 95% CI, 0.46-0.82; p


Conclusion: Patients with LEP had significant differences and disparities in
end-of-life decision-making. Interventions to facilitate informed
decision-making for those with LEP is a crucial component of care for this
group.


THU 1:30 pm:  “But She’ll Die if You Don’t!”: Understanding and
Communicating Risks at the End of Life (Janet Malek)


Clinicians sometimes decline to offer interventions even if their refusal will
result in an earlier death for their patients. For example, a nephrologist may
decide against initiating hemodialysis despite a patient’s rising creatinine
levels if death is expected within weeks even with dialysis.

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.

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Don’t Feed the Trolls: Bold Climate Action in a New, Golden Age of Denialism

July 21, 2017

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Less than a month after the 2016 presidential election, incoming White House Chief of Staff Reince Priebus stated that climate change denialism would be the “default position” of the Trump administration (Meyjes 2016). In March 2017, Scott Pruit, President Trump’s choice to lead the Environmental Protection Agency, expressed his belief—contrary to the estabilished scientific consensus—that carbon dioxide was not one of the primary contributors of climate change (Davenport 2107). Given this existence of climate denialism at the highest reaches of U.S. government, one might believe that, now more than ever, it is tremendously important to convince those who deny the reality of climate science of the well-established facts.[1] Surely, with truth on our side, we must trumpet the evidence, making deniers our primary target and acceptance of the truth of climate change our primary goal.

The time has come, however, to revisit this line of reasoning. We’ve spent too much time and energy trying to convince climate deniers of the obvious facts,[2] and false optimism has been too friendly to our entrenched inaction.[3] Arguing the science against the deep-rooted climate denial of a small but influential portion of American society has failed to achieve even modest climate action. The election of Donald Trump is, sadly, almost assuredly going to make the task more difficult, given his appointments of prominent climate deniers and fossil fuel advocates to every climate-relevant cabinet position (Sidahmed 2016). If successful climate action depended on convincing the radical deniers, we would justifiably despair at the task before us.

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.

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Ethical Health Care Reform

Recently I heard a Christian TV personality refer to Obamacare as “iniquitous.” This started me thinking, What would make a health care funding reform scheme “iniquitous”? Or, although the words aren’t synonymous, what would make such a scheme unethical? What should go into ethical health care reform?

The answers to these questions are legion and conflicting. There are some who see government intervention as inherently wrong; for them, the free market is the key to ethical health care reform. There are others who distrust the free market, and consider some degree of governmental control to be the only ethical option. Some see personal mandates to buy insurance as unethical; others understand the mandates as ethical solidarity with our neighbor. Some ardently believe justice means everyone gets exactly the coverage or treatment they pay for; others just as ardently believe justice means everyone gets the same coverage and treatment.

What is ethical health care reform? There are many possible answers. I am not sure that Obamacare is any more or less ethical than the versions of Trumpcare that have been put forward. I am not sophisticated or smart enough to pontificate about the free market or theories of justice.

One thing I am certain of, however: Whether the system relies on markets or government regulations, whether there are more or fewer mandates or taxes, whether everyone gets the same coverage or not, one final measure of whether or not a health care system is ethical is how it treats those who are the poorest and most disadvantaged among us.

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.

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Climate Policy in the Age of Trump

by Mathias Frisch

ABSTRACT. The Trump administration is in the process of undoing what were the two central planks of President Obama’s climate policy: First, Trump has called for a review of how the social cost of carbon is calculated in used in analyses of regulatory rule making and, second, Trump has announced that the United States is withdrawing from the Paris Agreement. In this paper I examine some of the conservative critics’ objections to the first plank: calculations of the social cost of carbon in climate cost benefit analyses. I argue that while some of these criticisms are justified, the criticisms end up strengthening arguments for the importance of the second plank: the urgent need for an ambitious climate policy, in accord with the Paris Agreement, as precaution against exposing others to the risk of catastrophic harms.

1. INTRODUCTION

As the record-breaking heat of 2016 continues into 2017, making it likely that 2017 will be the second hottest year on record just behind the El Niño year 2016, and as Arctic heat waves pushing the sea ice extent to record lows are mirrored by large scale sheets of meltwater and even rain in Antarctica—the Trump administration is taking dramatic steps to undo the Obama administration’s climate legacy.

In its final years, the Obama administration pursued two principal strategies toward climate policy. First, by signing the Paris Accord it committed the U.S. to contribute to global efforts to hold “the increase in the global average temperature to well below 2°C above pre-industrial levels and to pursue efforts to limit the temperature increase to 1.5°C

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.

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Refugees, Narratives, or How To Do Bad Things with Words

By Anna Gotlib

ABSTRACT. This paper addresses and critiques the anti-refugee rhetoric and policies, as well as their uncritical uptake, which developed around the candidacy of Donald Trump. My intent is to examine some of this election’s cruelest, most violent, and most racist rhetoric, reserved for Syrian (and other) refugees, and to consider some possible responses to such speech in the future. To that end, I problematize the representations and treatment of refugees within the United States from three distinct groups: European Jewish refugees of the Second World War; the Eastern Bloc refugees of the mid- and late twentieth century; and the current Syrian, largely Muslim refugees. I begin by defining the concepts of homelessness and moral luck. Second, I examine the three varying histories of refugee policies in the context of these two notions. Finally, I conclude with a combination of despair and hope: First, I offer a few observations about the role of language in the recent presidential election; second, I propose alternatives to the resulting linguistic and political violence by extending Hilde Lindemann’s notion of “holding” into sociopolitical contexts.

“How odd I can have all this inside me and to you it’s just words.”
― David Foster Wallace, The Pale King

I.  Introduction

The American election of 2016 was, in its vitriol, polarization, and outcome, unlike any in recent memory. This paper addresses and critiques the anti-refugee rhetoric and policies, as well as their uncritical uptake, which developed around the candidacy of Donald Trump. My intent is to examine and confront the fact that some of this election cycle’s cruelest, most violent, and most racist rhetoric was reserved for Syrian (and other) refugees, and to consider some possible responses to such speech in the future.

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.