Tag: rights

Bioethics News

GBI Summer School on Global Bioethics, Human Rights and Public Policy

GBI Summer School on Global Bioethics, Human Rights and Public Policy –  Our First Educational Field Trips

by Anaeke Paschal Chinonye

I am a Ph.D. in Philosophy, at the University of Lagos, Nigeria. I am the winner of a partial scholarship which gave me the possibility to attend this unique and very interesting program hosted by GBI.

Friday, June, 23, was a day for field trips. First to the United Nations Headquarters and then to Memorial Sloan Kettering Cancer Centre. Initially, I thought field trips would be mere social outings and sightseeing with opportunities to take a lot of pictures. The trips proved far more than that; it was rather educational trips loaded with significance. As I got to the main entrance, some basic facts about the UN which I learnt during my Master of International Law and Diplomacy class in the University of Lagos, Nigeria began to flash in my mind. Chiefly, a commitment to international peace and security.

One of my colleagues called me across the road to take pictures, immediately I crossed the road, my eyes went straight to an inscription from the Prophet Isaiah: They shall beat their swords into plough-shares and their spears into pruning hooks; nation shall no longer lift up sword against nation. Neither shall they learn war anymore. At this point, though the world is still ravaged by wars, terrorism, and insecurity, I felt the UN has a divine mandate which thus must be commended and supported.

Now, after the security check, as I walked into the compound, still lost in wondering contemplation of the critical need for global peace and security, I spotted the statue of a gun with a tied barrel…signaling no more wars.

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

Insurers Battle Families Over Costly Drug for Fatal Disease

June 23, 2017

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Nolan and Jack Willis, twins from upstate New York, and just 10 other boys took part in a clinical trial that led to the approval last fall of the very first drug to treat their rare, deadly muscle disease.

Now the Willis boys are again test cases as a different type of medical question comes to the fore: whether insurers will cover the controversial drug, Exondys 51, which can cost more than $1 million a year even though it’s still unclear if it works.

The boys’ insurer, Excellus BlueCross BlueShield, refused to cover the cost of the drug because the twins, who are 15, can no longer walk. Their disease, Duchenne muscular dystrophy, overwhelmingly affects boys and causes muscles to deteriorate, killing many of them by the end of their 20s.

“I’m cycling between rage and just sadness,” their mother, Alison Willis Hoke, said recently, on the day she learned that an appeal for coverage had been denied. For now, the company that sells the drug, Sarepta Therapeutics, is covering the treatment’s costs, but Mrs. Hoke does not know how long that will last.

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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 News

Is It Unethical to Design Robots to Resemble Humans?

June 22, 2017

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So goes the scene in Mike Judge’s cult classic film Office Space, which is a cathartic release from the constant indignities of the modern worker. The printer is a source of chagrin for its regular paper-jam notifications and its inability to properly communicate with its human users. There is no trigger to feel compassion toward this inanimate object: It is only a machine, made of plastic, and filled with microchips and wires. When the printer met its demise, the audience felt only joy.

But what if this brutal assault had been on a human-looking machine that had cried out to its attackers for mercy? If instead of a benign-looking printer, it was given a name and human characteristics? Would we still mindlessly attack it? Would we feel differently?

As technology progresses from inanimate objects governed by numbers to human-looking machines controlled with conversations, it raises questions as to the compassion owed to artificial intelligence—and each other.

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Qz

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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

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

New Concerns Raised Over Value of Genome-Wide Disease Studies

June 21, 2017

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Compare the genomes of enough people with and without a disease, and genetic variants linked to the malady should pop out. So runs the philosophy behind genome-wide association studies (GWAS), which researchers have used for more than a decade to find genetic ties to diseases such as schizophrenia and rheumatoid arthritis. But a provocative analysis now calls the future of that strategy into question — and raises doubts about whether funders should pour more money into these experiments.

GWAS are fast expanding to encompass hundreds of thousands, even millions, of patients (see ‘The genome-wide tide’). But biologists are likely to find that larger studies turn up more and more genetic variants — or ‘hits’ — that have minuscule influences on disease, says Jonathan Pritchard, a geneticist at Stanford University in California. It seems likely, he argues, that common illnesses could be linked by GWAS to hundreds of thousands of DNA variants: potentially, to every single DNA region that happens to be active in a tissue involved in a disease.

In a paper published in Cell on 15 June1, Pritchard and two other geneticists suggest that many GWAS hits have no specific biological relevance to disease and wouldn’t serve as good drug targets. Rather, these ‘peripheral’ variants probably act through complex biochemical regulatory networks to influence the activity of a few ‘core’ genes that are more directly connected to an illness.

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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 News

Global Bioethics Initiative (GBI) launches its third edition Summer School Program

Global Bioethics Initiative (GBI) launches its third edition Summer School Program

New York, New York June 19, 2017, GBI starts its summer school program sponsored by Pace University, College of Health Professions and New York Medical College. Lead by experts in the field of Bioethics, students and professionals will witness Bioethics in various forms such as film screenings, field trips, and lectures/seminars, ending with a completion ceremony. Topics addressed in the program are: embryonic stem cell research, cloning, gene therapy, end-of-life care, genetics, reproductive technologies, human subject research, organ transplantation and access to health care.

“I am absolutely confident you leave this program enriched,”said Dr. Bruce Gelb, President of GBI. “You will find that what you learn over the coming days, will impact how you interact and engage with the world in many aspects of life.”

“There is a lack of opportunities for undergraduate, graduate students and professionals to learn about practical bioethics and GBI summer school helps to fill this void,” said​ Ana Lita, Co-Founder and Executive Director of GBI.

GBI is a not-for-profit international educational organization founded in 2011, by Dr. Ana Lita. GBI keeps the international community, policy decision-makers, the media, and the public versed in bioethical concepts. GBI provides this level of knowledge through an annual summer school program, human rights advocacy, and public policy reviews. GBI is associated with the United Nations Department of Information (UNDPI) with special consultative status with the United Nations Economic and Social Council (ECOSOC).

Attendees are encouraged to join Dr. Harriet R. Feldman, Dr. Charles Debrovner, and Dr. Ana Lita for the program’s introductory cocktail reception on June 20th, from 6-9PM at Pace University’s Aniello Bianco Room, 1 Pace Plaza, New York, New York,  featuring the singer, Sarah Hayes and​ her Trio​.

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

Charlie Gard – Balancing Due Process and Patient Best Interest

In January 2017, clinicians at Great Ormond Street Hospital determined that continued life-sustaining medical treatment for Charlie Gard was not in his best interest.


Nevertheless, those clinicians continued administering that treatment for months as three levels of courts considered the issue.  Between April and June, the clinicians’ judgment was repeatedly confirmed by the UK High Court, the UK Court of Appeal, and the UK Supreme Court.

Now, the case is before the European Court of Human Rights.  Yesterday, the UK Supreme Court struggled with granting yet an additional stay pending the outcome of the ECHR proceedings.

This is not at all uncommon.  Many litigated medical futility conflicts preserve the status quo of life-sustaining treatment pending final resolution.  That regularly means that even dead patients (like Aden Hailu) are sustained for six months or longer pending adjudication.  This is a key reason that courts often recommend adjudication by ethics committees and other more nimble and responsive tribunals.

Source: bioethics.net, a blog maintained by the editorial staff of The American Journal 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

Using AI to Predict Criminal Offending: What Makes it ‘Accurate’, and What Makes it ‘Ethical’.

Jonathan Pugh

Tom Douglas

 

The Durham Police Force plans to use an artificial intelligence system to inform decisions about whether or not to keep a suspect in custody.

Developed using data collected by the Force, The Harm Assessment Risk Tool (HART) has already undergone a 2 year trial period to monitor the accuracy of the tool. Over the trial period, predictions of low risk were accurate 98% of the time, whilst predictions of high risk were accurate 88% of the time, according to media reports. Whilst HART was not so far been used to inform custody sergeants’ decisions during this trial period, the police force now plans to take the system live.

Given the high stakes involved in the criminal justice system, and the way in which artificial intelligence is beginning to surpass human decision-making capabilities in a wide array of contexts, it is unsurprising that criminal justice authorities have sought to harness AI. However, the use of algorithmic decision-making in this context also raises ethical issues. In particular, some have been concerned about the potentially discriminatory nature of the algorithms employed by criminal justice authorities.

These issues are not new. In the past, offender risk assessment often relied heavily on psychiatrists’ judgements. However, partly due to concerns about inconsistency and poor accuracy, criminal justice authorities now already use algorithmic risk assessment tools. Based on studies of the past offenders, these tools use forensic history, mental health diagnoses, demographic variables and other factors to produce a statistical assessment of re-offending risk.

Beyond concerns about discrimination, algorithmic risk assessment tools raise a wide range of ethical questions, as we have discussed with colleagues in the linked paper.

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

Tweet Revenge

June 14, 2017

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For many, the essence of gathering at conferences is the sharing of scientific information, a peek at interesting research in progress.

The policy, new this year and unusual for scientific conferences, is the most public manifestation yet of the tension between the drug and medical device companies that help sponsor the ADA’s flagship programs on one side and researchers and patients on the other.

The New England Journal of Medicine doesn’t consider this a problem. Some researchers on Twitter pointed to NEJM guidelines that state “online posting of an audio or video recording of an oral presentation at a medical meeting, with selected slides from the presentation, is not considered prior publication,” according to Medscape.

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KHN

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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

2nd International Conference on End-of-Life Law, Ethics, Policy, and Practice

Check out this remarkable collection of concurrent sessions coming up at the 2nd International Conference on End-of-Life Law, Ethics,
Policy, and Practice (ICEL) in Halifax.



The Ethics of POLST
Lloyd Steffen


The Perils of POLST
Jean Abbott


Advanced Directives and Advanced Care Planning
Peter Saul


“Rock, Paper, Scissors” – Ideologies of End of Life Care for Older People in Hospital
Laura Green


The Cultural Construction of End of Life Issues in Biomedicing: Anthropological Perspectives
Betty Wolder Levin


Caregiver Perspectives of Palliative and End of Life Care for Individuals at End-Stage Dementia in Newfoundland and Labrador: A Qualitative 
Phenomenological Perspective
Barbara Mason


End of Life Regulation and Recent Evolutions in France
Veronique Fournier


To Live and Let Die. Withholding and Withdrawing Life Sustaining Treatment in Argentina: From Therapeutic to Judicial Obstinacy
Maria Ciruzzi


When and How I Shan’t Live: Refusing Life-Prolonging Medical Treatment and Article 8 ECHR
Isra Black


Divorcing Mercy Killing from Euthanasia
Bryanna Moore


The Shift Away from Suicide Talk: Incorporating Voices of Experience
Phoebe Friesen


Elderly Who are Ready to Give Up on Life and the Right to Autonomy
Michelle Habets


Dutch GP’s Views on Good Dying and Euthanasia
Katja ten Cate


Medical Aid in Dying in New York State: Physician Attitudes and Impact of Framing Bias
Brendan Parent


Physicians’ Perceptions of Aid in Dying in Vermont
Ari Kirshenbaum


A New American Threat to Open Discussion of End-of-Life Issues
Robert Rivas


Demedicalised Assistance in Suicide
Martijn Hagens


The Human Rights Implications of the Blanket Ban on Assisted Suicide in England and Wales
Stevie Martin


A Year in Review: The Who, When, Why and How of Requests for Medical Aid in Dying in Quebec
Lori Seller and Veronique Fraser


Medical Aid in Dying: An Update from Québec
Michelle Giroux


Regulating MAiD: The Medical Regulatory Perspective
Andréa Foti


Patients with Parkinson’s Disease, Caregivers’, and Healthcare Providers’ Perspectives on Advance Care Planning on End-of-Life Care
Kim Jameson


‘You’re Going to Die.

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.