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Bioethics Blogs

Editorial Note

by Rebecca Kukla 

I’m extraordinarily proud and excited to present this special issue of the Kennedy Institute of Ethics Journal, which focuses on ethical, social, and political reflections on the 2016 U.S. election and the early days of Donald Trump’s presidency. It is rare for a philosophy journal to take up such a current and pressing topic. When I decided to put together this issue, I was not sure what sort of submissions I would receive, or how many. I was moved and elated to receive dozens of excellent submissions on a wide range of topics. In making difficult choices about which ones to publish, I eliminated any that took an abstract or distanced approach to the material. Plenty of good-quality philosophical work uses this sort of abstract methodology, but I wanted to publish only papers that captured and grappled with the immediacy and the practical enormity of the changes and challenges that this last election posed. I also eliminated papers that were more like op-ed pieces than scholarly articles. I chose only papers that offered rigorous and deep conceptual analysis, as I wanted this issue to continue the journal’s hallmark tradition of combining philosophical sophistication with practical engagement. The submissions that made the final cut – both those that appear in the special issue itself, and those that appear in the supplement to the issue on the journal’s blog – are, in my opinion, more than just examples of excellent and ethically relevant scholarship; they are also brave.

The topics represented in this issue, including the supplement, span a wide range of the controversies raised by Trump’s victory.

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

Burke and Wills: Why We Might All Fear the Judgment in Charlie Gard

The Case of Donald Wills

Donald Wills is a self-made man. He is billionaire British banker who has taken an interest in technology. He believes the Singularity is near and wishes to live as long as possible. He completes an advance directive to use his money to keep him alive at all costs, should he become ill and unable to express his wishes. He tells his wife about these desires.

Donald develops a rare condition where the mitochondria in all his cells stop working. The mitochondria are power packs for every cell. Donald’s muscles stop working and he is admitted to a famous London hospital and has to be put on a breathing machine. His brain is affected- he suffers fits which need to be controlled by medication. There is no known cure and he is going downhill.

Doctors call in his wife and explain his dismal prognosis. “It is,” they say, “in his best interests to stop this burdensome treatment in intensive care. He will never regain normal brain function but he is conscious at times and feels pain. He should be allowed to die with dignity.” After all, Donald is 75.

Donald’s wife, Melanie, is shattered. But she goes on the internet to see if anything can be done. She knows this is what Donald would want. She finds a world expert at a world class centre in Boston who has trialled a new treatment, X, on ten patients and has obtained significant results in one of them. She calls the expert and he tells her there is some chance of some improvement in her husband but it is low.

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

Mental Privacy in the Age of Big Data

By Jessie Ginsberg
Jessie Ginsberg is a second year student in the Master of Arts in Bioethics program and a third year law student at Emory University. 

A father stood at the door of his local Minneapolis Target, fuming, and demanding to speak to the store manager. Holding coupons for maternity clothes and nursing furniture in front of the manager, the father exclaimed, “My daughter got this in the mail! She’s still in high school, and you’re sending her coupons for baby clothes and cribs? Are you trying to encourage her to get pregnant?”
Target was not trying to get her pregnant. Unbeknownst to the father, his daughter was due in August.  
In his February 16, 2012 New York Times article entitled, “How Companies Learn Your Secrets,” Charles Duhigg reported on this Minneapolis father and daughter and how companies like Target use marketing analytics teams to develop algorithms to anticipate consumers’ current and future needs. Accumulating data from prior purchases, coupon use, surveys submitted, emails from Target that were opened, and demographics, a team of analysts render each consumer’s decision patterns into neatly packaged data sets tailored to predict their future buying choices. 

Flash forward to 2017, a time where online stores like Amazon dominate the market and cell phones are reservoirs of personal information, storing intimate details ranging from your location to your desired body weight to your mood. Furthermore, data analysis algorithms are more sophisticated than ever before, gobbling up volumes of information to generate highly specific and precise profiles of current and potential consumers.

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 News

How a Company You’ve Never Heard of Sends You Letters about Your Medical Condition

June 20, 2017

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Franco did not have psoriasis. But the year before, she remembered, she had searched for information about it online, when a friend was dealing with the condition. And a few months prior to getting the letter, she had also turned to the internet with a question about a skin fungus. It was the sort of browsing anyone might do, on the assumption it was private and anonymous.

Now there was a letter, with her name and home address on it, targeting her as a potential skin-disease patient. Acurian is in the business of recruiting people to take part in clinical trials for drug companies. How had it identified her? She had done nothing that would publicly associate her with having a skin condition.

When she Googled the company, she found lots of people who shared her bewilderment, complaining that they had been contacted by Acurian about their various medical conditions. Particularly troubling was a parent who said her young son had received a letter from Acurian accurately identifying his medical condition and soliciting him for a drug trial—the first piece of mail he’d had addressed to him besides birthday cards from family members.

… Read More

Image: By EFF – Own work, CC BY 3.0 us, https://commons.wikimedia.org/w/index.php?curid=27598327

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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

Fake News – A Role for Neuroethics?

By Neil Levy
Neil Levy is professor of philosophy at Macquarie University, Sydney, and a senior research fellow at the Uehiro Centre for Practical Ethics, University of Oxford.
 
Fake news proliferates on the internet, and it sometimes has consequential effects. It may have played a role in the recent election of Donald Trump to the White House, and the Brexit referendum. Democratic governance requires a well-informed populace: fake news seems to threaten the very foundations of democracy.
How should we respond to its challenge? The most common response has been a call for greater media literacy. Fake news often strikes more sophisticated consumers as implausible. But there are reasons to think that the call for greater media literacy is unlikely to succeed as a practical solution to the problem of fake news. For one thing, the response seems to require what it seeks to bring about: a better informed population. For another, while greater sophistication might allow us to identify many instances of fake news, some of it is well crafted enough to fool the most sophisticated (think of the recent report that the FBI was fooled by a possibly fabricated Russian intelligence report).
Moreover, there is evidence that false claims have an effect on our attitudes even when we initially identify the claims as false. Familiarity – processing fluency, in the jargon of psychologists – influences the degree to which we come to regard a claim as plausible. Due to this effect, repeating urban legends in order to debunk them may leave people with a higher degree of belief in the legends than before.

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

World Elder Abuse Awareness Day (#WEADD)

Kathy Greenlee,
Vice President for Aging and Health Policy

Why I Am Tired and Inspired

Kathy Greenlee is the Vice President for Aging and Health Policy at the Center for Practical Bioethics. She previously served as the U.S. Assistant Secretary for Aging and Administrator of the Administration for Community Living from 2009 to 2016. She will be the keynote speaker at “A Conference on Elder Rights and Protection” in Maui, Hawaii on June 15, 2017, World Elder Abuse Awareness Day.

The United Nations recognizes June 15 as World Elder Abuse Awareness Day. Started in 2006 by Elizabeth Podnieks of the International Network for the Prevention of Elder Abuse, the day has become an international opportunity to highlight the global problem of the abuse of older people.

During my tenure as U.S. Assistant Secretary for Aging, I had the honor of observing “World Day” in venues as exotic as the White House and the United Nations Headquarters in New York City. The problem of abuse of the aged is ubiquitous. It happens in every corner of the world, in every culture. Unfortunately and outrageously, it happens to one out of every 10 older adults in the United States.

The impact of abuse can be immediate, such as a sudden punch or a sexual assault. It can develop over time, as is the case with older adults who are neglected and allowed to languish, decline and die from the horrible circumstances that accompany the failure to receive care. Elder abuse can be caused by family members who strike out because of stress, anger or greed.

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

Prozac Nation Is Now the United States of Xanax

It was 70 years ago that the poet W.H. Auden published “The Age of Anxiety,” a six-part verse framing modern humankind’s condition over the course of more than 100 pages, and now it seems we are too rattled to even sit down and read something that long (or as the internet would say, tl;dr)

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 Neuroethics Blog Series on Black Mirror: Virtual Reality

By Hale Soloff
Hale is a Neuroscience PhD student at Emory University. He aims to integrate neuroethics investigations with his own research on human cognition. Hale is passionate about science education and public science communication, and is pursuing a career in teaching science. 
Humans in the 21st century have an intimate relationship with technology. Much of our lives are spent being informed and entertained by screens. Technological advancements in science and medicine have helped and healed in ways we previously couldn’t dream of. But what unanticipated consequences may be lurking behind our rapid expansion into new technological territory? This question is continually being explored in the British sci-fi TV series Black Mirror, which provides a glimpse into the not-so-distant future and warns us to be mindful of how we utilize our technology and how it can affect us in return. This piece is the first in a series of posts that will discuss ethical issues surrounding neuro-technologies featured in the show and will compare how similar technologies are impacting us in the real world. 

Black Mirror – Plot Summary 

Some of the neuro-technologies featured in Black Mirror at first seem marvelous and enticing, but the show repeatedly illustrates how abusing or misusing such technologies can lead to disturbing, and even catastrophic, consequences. This may seem scary enough, but what if the goal of a device was to intentionally frighten its user? 

In the episode “Playtest” a man named Cooper volunteers to help a video game company test out a brand-new device, referred to as a “mushroom.”

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

Controlling Direct Access to Personal Health Information

By Sarah Duranske

In 1978, for the first time, an American woman could take a pregnancy test in the comfort of her own home. Critics claimed that home pregnancy tests only would be used by promiscuous or immoral women who were too ashamed to visit their doctors, but the appeal to women was undeniable. [1] Today, eight out of ten women learn they are pregnant from a home pregnancy test.[2]

In the 1980s, as the AIDS crisis swept the nation, the FDA banned the use of at-home AIDS tests over fears of poor test reliability and insufficient counseling.[3] Advocacy groups bolstered these fears by highlighting the suicide of a man who jumped off the Golden Gate Bridge after testing positive for HIV.[4]  But with improvements in testing technology and treatment options – and stymied by a stubbornly high infection rate – the FDA reversed its stance.  It encouraged home test kit applications in 1990 and approved two home collection kits in 1996.[5]  Within a year, more than 175,000 people purchased kits, and the expanded screening was not associated with any increase in the suicide rate.[6]

In 2013, the FDA shut down 23andMe’s health-related genetic tests due to concerns that users would act, or fail to act, to their detriment based on incorrect test results or unsupported clinical interpretations. In spite of experts’ concerns, 23andMe had genotyped around 400,000 individuals between its 2007 market entrance and the FDA’s 2013 action.[7] Studies consistently demonstrate (for better or worse) that people don’t change their behavior based on genetic tests that report on disease risk.

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.