Tag: values

Bioethics Blogs

Agreement and disagreement about experimental treatment. The Charlie Gard Appeal

by Dominic Wilkinson and Julian Savulescu

@Neonatalethics

@juliansavulescu

Tomorrow, the UK Court of Appeal will review the controversial case of a British infant, Charlie Gard. Charlie’s parents are appealing a recent High Court decision that gave doctors permission to withdraw his life support. They have raised money for Charlie to travel to the US for an experimental medical treatment.

 

Best Interests

The legal decision for Charlie will be based upon an assessment of his best interests. He has a rare genetic disorder affecting his muscles and his brain. He has been on life support since last October and has been progressively deteriorating. A neurologist in the USA has suggested that experimental nucleoside treatment might, in theory, offer some benefit, though it has never previously been tried in this situation.

The central ethical question is whether it would be best to provide the experimental treatment and continue intensive care for Charlie for several months more, or to withdraw treatment and allow him to die. How should we weigh up the risks and benefits of those two alternatives?

We have previously written about this difficult question. In a pair of editorials in the Lancet medical journal, we expressed different points of view. Dominic Wilkinson argued that the proposed course of treatment would do more harm than good. In his view, it is likely that Charlie would experience pain and discomfort from continued treatment; it is also unlikely, given what is known about it, that Charlie would benefit from nucleoside treatment. In contrast, Julian Savulescu argued that it is not clear that continued mechanical ventilation in intensive care is so terrible a life that it would not be worth living.

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

Nudges in a post-truth world.

Guest Post: Neil Levy

Full Article: Nudges in  a Post-Truth World

Human beings are motivated reasoners. We find ways to believe what we want to believe, sometimes even in the face of strong evidence to the contrary. This fact helps to explain why so many political issues are intractable, and why so many of us reject the scientific consensus on urgent issues like GMOs, vaccination and climate change. Given the importance of these issues, any means of increasing our responsiveness to evidence deserves exploration.

Nudges – proposals, stemming from the behavioural sciences, for changing the way people act by changing their environments – may be one way of increasing responsiveness to evidence. In my paper, I briefly review evidence that suggests that people resist messages for (apparently) irrelevant reasons, and that by focusing on these reasons, we can make them more responsive to these messages. For instance, people tend to dismiss testimony that comes from those who do not share their political ideology, even when the issue is an empirical one (like climate change). There is evidence that ensuring that the ideology of the source matches the ideology of the audience makes the audience more receptive to the message.

But nudges are ethically controversial. There are a number of reasons why they are controversial, but the central reason is that many people see them as threatening the autonomy of the nudged. It is one thing to address people are reasoning beings, by giving them arguments. It is another to address them as mechanisms, bypassing their reasoning.

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

Welcome 2017 HIV and Drug Abuse Prevention Research Ethics Training Institute Fellows!

The Fordham University HIV and Drug Abuse Prevention Research Ethics Training Institute (RETI) is pleased to announce that the following individuals have been selected as 2017 fellows:

Dr. Stephanie Cook, New York University
Estreet
Dr. Anthony Estreet, Morgan State University
Fielding Miller
Dr. Rebecca Fielding-Miller, University of California, San Diego
Guta
Dr. Adrian Guta, University of Windsor
Pagano-Therrien
Dr. Jesica Pagano-Therrien, University of Massachusetts 
Pasipanodya
Dr. Elizabeth Pasipanodya, University of California, San Diego
Philbin
Dr. Morgan Philbin, Columbia University
John_S
Dr. John Sauceda, University of California, San Francisco

The Fordham University  HIV and Drug Abuse Prevention Research Ethics Training Institute (RETI), now in its 7th year, is a training grant sponsored by the National Institute on Drug Abuse (NIDA) (R25 DA031608-07), Principal Investigator, Dr. Celia B. Fisher, Director, Center for Ethics Education). The RETI provides early-career investigators in the social, behavioral, medical and public health fields with an opportunity to gain research ethics training. In doing so, RETI addresses the urgent need for HIV and drug use investigators who can identify and address ethical issues, engage drug using and other at-risk communities in the construction and evaluation of population sensitive research protections, and generate empirical data to inform ethical practice and policies for HIV prevention science. Through their funded Mentored Research Projects (MRP), RETI fellows generate empirical data, publish their findings in a variety of high-impact academic journals, and are trained to apply for increasing grant opportunities.

The program’s aims are to: (1) increase trainees’ knowledge of and capacity to address key ethical issues in HIV and drug abuse prevention research; (2) increase trainees’ capacity to ethically engage participants and communities in the construction of participant protections that reflect the values and merit the trust of all stakeholders in HIV and drug abuse prevention research.; (3) increase trainees’ capacity to conduct research that will generate data to inform HIV and drug abuse prevention research practices and policies; and (4) create and sustain an information and communication network for trainees, faculty and others in the field for enhancing ethical knowledge, ethical dialogue and future professional collaborations in HIV and drug abuse prevention research ethics.

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

Welcome 2017 HIV and Drug Abuse Prevention Research Ethics Training Institute Fellows!

The Fordham University HIV and Drug Abuse Prevention Research Ethics Training Institute (RETI) is pleased to announce that the following individuals have been selected as 2017 fellows:

Dr. Stephanie Cook, New York University EstreetDr. Anthony Estreet, Morgan State University Fielding MillerDr. Rebecca Fielding-Miller, University of California, San Diego GutaDr. Adrian Guta, University of Windsor Pagano-TherrienDr. Jesica Pagano-Therrien, University of Massachusetts  PasipanodyaDr. Elizabeth Pasipanodya, University of California, San Diego PhilbinDr. Morgan Philbin, Columbia University John_SDr. John Sauceda, University of California, San Francisco

The Fordham University  HIV and Drug Abuse Prevention Research Ethics Training Institute (RETI), now in its 7th year, is a training grant sponsored by the National Institute on Drug Abuse (NIDA) (R25 DA031608-07), Principal Investigator, Dr. Celia B. Fisher, Director, Center for Ethics Education). The RETI provides early-career investigators in the social, behavioral, medical and public health fields with an opportunity to gain research ethics training. In doing so, RETI addresses the urgent need for HIV and drug use investigators who can identify and address ethical issues, engage drug using and other at-risk communities in the construction and evaluation of population sensitive research protections, and generate empirical data to inform ethical practice and policies for HIV prevention science. Through their funded Mentored Research Projects (MRP), RETI fellows generate empirical data, publish their findings in a variety of high-impact academic journals, and are trained to apply for increasing grant opportunities.

The program’s aims are to: (1) increase trainees’ knowledge of and capacity to address key ethical issues in HIV and drug abuse prevention research; (2) increase trainees’ capacity to ethically engage participants and communities in the construction of participant protections that reflect the values and merit the trust of all stakeholders in HIV and drug abuse prevention research.; (3) increase trainees’ capacity to conduct research that will generate data to inform HIV and drug abuse prevention research practices and policies; and (4) create and sustain an information and communication network for trainees, faculty and others in the field for enhancing ethical knowledge, ethical dialogue and future professional collaborations in HIV and drug abuse prevention research ethics.

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

Are Incentives Corrupting? The Case of Paying People to be Healthy.

Written by Dr Rebecca Brown

Financial incentives are commonplace in everyday life. As tools of states, corporations and individuals, they enable the ‘tweaking’ of motivations in ways more desirable to the incentiviser. A parent may pay her child £1 to practice the piano for an hour; a café offers a free coffee for every nine the customer buys; governments offer tax breaks for homeowners who make their houses more energy efficient. Most people, most of the time, would probably find the use of financial incentives unobjectionable.

More recently, incentives have been proposed as a means of promoting health. The thinking goes: many diseases people currently suffer from, and are likely to suffer from in the future, are largely the result of behavioural factors (i.e. ‘lifestyles’). Certain behaviours, such as eating energy dense diets, taking little exercise, smoking and drinking large amounts of alcohol, increase the risk that someone will suffer from diseases like cancer, heart disease, lung disease and type II diabetes. These diseases are very unpleasant – sometimes fatal – for those who suffer from them, their friends and family. They also create economic harms, requiring healthcare resources to be directed towards caring for those who are sick and result in reduced productivity through lost working hours. For instance,the annual cost to the economy of obesity-related disease is variously estimated as £2.47 billion£5.1 billion and a whopping $73 billion (around £56.5 billion), depending on what factors are taken into account and how these are calculated. Since incentives are generally seen as useful tools for influencing people’s behaviour, why not use them to change health-related behaviours?

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

Hastings Center – “The Last Stage of Life”

The Hastings Center has started a new project – 
 “The Last Stage of Life.”


People are living longer, but with more years of chronic illness and frailty. Many lack the financial, community, or health care resources they need to secure their own well-being, and often die in isolation or with family caregivers who themselves have become ill from the stress of their caregiving burdens. 


With support from the Robert Wilson Charitable Trust and with additional funds from Hastings’s endowment, the Hastings Center has begun a two-year planning process to determine how best the field of bioethics can meet the new and complex needs of our aging society and of aging people and their caregivers.  


As a first step, the Center recently brought together a wide variety of experts from numerous disciplines and societal sectors – including health policy experts, demographers, architects, philosophers, gerontologists, physicians, nurses, urban planners, and grant makers concerned with aging and end-of-life care. The meeting focused on defining a social ethics approach to this challenge and began identifying the values that should guide structures and policies to promote good and prevent harms and injustices to aging people and their caregivers. Among the questions explored were:

  • What is the epidemiology of population aging in the United States?
  • How well do our current structures and policies respond to age-related illness and frailty?
  • What is human flourishing in the face of frailty?
  • How can we understand and articulate what makes for a good life for people living with age-related illness and frailty, especially those with limited resources?

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

Hastings Center – “The Last Stage of Life”

The Hastings Center has started a new project – 
 “The Last Stage of Life.”


People are living longer, but with more years of chronic illness and frailty. Many lack the financial, community, or health care resources they need to secure their own well-being, and often die in isolation or with family caregivers who themselves have become ill from the stress of their caregiving burdens. 


With support from the Robert Wilson Charitable Trust and with additional funds from Hastings’s endowment, the Hastings Center has begun a two-year planning process to determine how best the field of bioethics can meet the new and complex needs of our aging society and of aging people and their caregivers.  


As a first step, the Center recently brought together a wide variety of experts from numerous disciplines and societal sectors – including health policy experts, demographers, architects, philosophers, gerontologists, physicians, nurses, urban planners, and grant makers concerned with aging and end-of-life care. The meeting focused on defining a social ethics approach to this challenge and began identifying the values that should guide structures and policies to promote good and prevent harms and injustices to aging people and their caregivers. Among the questions explored were:

  • What is the epidemiology of population aging in the United States?
  • How well do our current structures and policies respond to age-related illness and frailty?
  • What is human flourishing in the face of frailty?
  • How can we understand and articulate what makes for a good life for people living with age-related illness and frailty, especially those with limited resources?

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

Unbefriended and Unrepresented: Better Medical Decision Making for Incapacitated Patients Without Healthcare Surrogates

How should we make medical decisions for incapacitated patients who have no available legally-authorized surrogate decision maker? Because these patients lack decision making capacity, they cannot authorize treatment themselves. Because they lack a surrogate, nobody else can authorize treatment either. Clinicians and researchers have referred to these individuals as “adult orphans” or as “unbefriended,” “isolated,” or “unrepresented” patients. Clinicians and researchers have also described them as “unimaginably helpless,” “highly vulnerable,” and as the “most vulnerable,” because “no one cares deeply if they live or die.”

The persistent challenges involved in obtaining consent for medical treatment on behalf of these individuals is an immense problem in ethics and patients’ rights. Some commentators describe caring for the unbefriended as “one of the most difficult problems in medical decision making.” Others call it the “single greatest category of problems” encountered in bioethics consultations.

Appropriately, this problem is getting more attention. Major policy reports from both legal and medical associations have focused on decision making for the unbefriended. Perhaps most notably, the elite mainstream media has repeatedly covered the problem of the unbefriended in the United States. Decision-making for the unbefriended has also been the primary topic of recent day-long or multi-day conferences, both themed, subject-specific conferences, and individual sessions at several national and regional professional association meetings.

Finally, the problem of the unbefriended has received increasing attention not only in the meeting halls of conferences, but also in the pages of academic literature. New articles have been printed in law journals, medical journals, nursing journals, long-term care journals, and bioethics journals.

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

Unbefriended and Unrepresented: Better Medical Decision Making for Incapacitated Patients Without Healthcare Surrogates

How should we make medical decisions for incapacitated patients who have no available legally-authorized surrogate decision maker? Because these patients lack decision making capacity, they cannot authorize treatment themselves. Because they lack a surrogate, nobody else can authorize treatment either. Clinicians and researchers have referred to these individuals as “adult orphans” or as “unbefriended,” “isolated,” or “unrepresented” patients. Clinicians and researchers have also described them as “unimaginably helpless,” “highly vulnerable,” and as the “most vulnerable,” because “no one cares deeply if they live or die.”

The persistent challenges involved in obtaining consent for medical treatment on behalf of these individuals is an immense problem in ethics and patients’ rights. Some commentators describe caring for the unbefriended as “one of the most difficult problems in medical decision making.” Others call it the “single greatest category of problems” encountered in bioethics consultations.

Appropriately, this problem is getting more attention. Major policy reports from both legal and medical associations have focused on decision making for the unbefriended. Perhaps most notably, the elite mainstream media has repeatedly covered the problem of the unbefriended in the United States. Decision-making for the unbefriended has also been the primary topic of recent day-long or multi-day conferences, both themed, subject-specific conferences, and individual sessions at several national and regional professional association meetings.

Finally, the problem of the unbefriended has received increasing attention not only in the meeting halls of conferences, but also in the pages of academic literature. New articles have been printed in law journals, medical journals, nursing journals, long-term care journals, and bioethics journals.

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

Rethinking The Obligation To Provide Universal Healthcare Coverage: The need for moral imagination

Healthcare is indeed complicated, in case anyone with a
speck of knowledge about it ever thought otherwise. There are many ways to
organize a healthcare system, as is evident from all the various ways advanced
industrial societies around the globe provide healthcare to their citizens.
Questions about the extent to which the private insurance system versus the
government is involved brings us back to protracted debates about the legitimate
role of government and whether or not citizens have a basic right to healthcare,
or should healthcare be assumed to be one more market service which individuals
may elect to use or not? Sadly, in the United States these questions often are
framed in abstract terms appealing to general ideological values and goals that
shape and limit the range of viable policy options. What I want to emphasize in
my blog today is the need for moral imagination—what’s it like to be in the
shoes of those who are suffering, and often without health insurance, and
without a job?  This is a first step we
all must take before we can weigh our moral obligations to provide healthcare
to everyone.

Before the passage of the Affordable Care Act (ACA) there
were over 45 million uninsured Americans who did not have access to a primary
care physician. That number has been reduced by about 18 million, but now we at
risk of seeing this number rise again with the possibility of a repeal of the
ACA and passage of a GOP led alternative. The Congressional Budget Office
(CBO), a politically independent agency, estimated that if the American
Health Care Act had past would eventually lead to 24 million people loosing
their health care insurance by 2026.

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.