Tag: human rights

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June 2017 Newsletter

Global Bioethics Initiative (GBI) is dedicated to fostering public awareness and understanding of bioethical issues, and to exploring solutions to bioethical challenges.
Through its events and activities, which include annual summer schools on global bioethics, GBI seeks to keep the international community, policy decision-makers, the media, and the general public aware of important bioethical issues which is essential for making informed decisions and fostering public debate. Using various platforms, we at GBI are able to promote our motto “Doing bioethics in real life!”.
GBI is an active member of the United Nations Academic Impact (UNAI) and enjoys a special consultative status with the United Nations Economic and Social Council, the UN’s central platform for debate, reflection, and innovative thinking on sustainable development. Check out our website here.
Global Bioethics Initiative (GBI) launches
its third edition Summer School Program

NYC (June 19-30), 2017New 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.”

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 sad case of Charlie Gard and the rights *and wrongs* of experimental treatment

By Dominic Wilkinson @Neonatalethics

 

In a blog post published yesterday, Julian Savulescu argues that Charlie Gard should have received the experimental treatment requested by his parents 6 months ago. He further argues that “we should be more aggressive about trials of therapy where there are no other good options”.

I have previously argued (in a blog and in an editorial in the Lancet) that the requested treatment is not in Charlie’s best interests. In a forthcoming paper (co-authored with John Paris, Jag Ahluwahlia, Brian Cummings and Michael Moreland), we compare the US and UK legal approaches to cases like this, and argue that the US approach is deeply flawed.

Here are four areas where I agree with Julian

  1. In retrospect, it would have been better for Charlie to have received the requested treatment 6 months again than to have a protracted legal dispute (with continued treatment in intensive care anyway)
  2. We should generally allow patients who are dying or severely ill, without other available treatment, to try experimental treatment if that is something that they (or their family) strongly desire
  3. If experimental treatments are unaffordable in public health systems but patients are able to pay for them privately, or have crowd-sourced funding for them, they should be made available
  4. Experimental treatments should not be provided where the side effects make that treatment highly likely not to be in the patient’s interests.

However, despite these areas of common ground, I reach starkly different conclusions from Julian. In my view, the doctors were right to oppose experimental treatment for Charlie in January, the judges were right to decline the family’s request for treatment in April, and it would be deeply ethically problematic to provide the treatment now, notwithstanding the recent intervention of the US president and the Pope.

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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Rethinking the Belmont Report?

Some bioethicists link the beginnings of our field to the Nazi Medical experiments and the Nuremberg Trial (Annas). Whether this is the beginning of bioethics is debatable, but without a doubt, research ethics has been a central topic in the field. In fact, the very first federal bioethics commission laid out the principles of research ethics in the Belmont Report. Later, the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research recommended to the President and Congress that a uniform framework and set of regulations should govern human subjects research.  This effort reached fruition under The Federal Policy for the Protection of Human Subjects or the “Common Rule” that was issued in 1991.  Since then, there have been no major changes to the regulations – until now.  After a five-year process and thousands of comments, the new “final rule” was released on January 19th, 2017.  The July 2017 issue of the American Journal of Bioethics addresses these changes.  In addition to our usual open peer commentaries, we are posting a number of blog posts written in response to the AJOB target article.


by Ibrahim Garba, MA, JD, LLM, Elizabeth Hall-Lipsy, JD, MPH, Leila Barraza JD, MPH

Norms supporting ethical research have been part of international human rights law from the start. The Doctors Trial in 1947 convicting 23 Nazi physicians and officials accused of euthanasia and unethical medical experiments produced the Nuremburg Code. The Code became a blueprint for subsequent human subject protection frameworks, most notably the World Medical Association’s Ethical Principles for Medical Research Involving Human Subjects (i.e.,

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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Medical Decision-Making In the Tragic Life of Charlie Gard

by Craig Klugman, Ph.D.

On Friday, Charlie Gard is scheduled to have his life support discontinued. Charlie Gard is an 11-month-old baby born with RRM2B encephalomyopathic mitochondrial DNA depletion syndrome—a rare genetic disorder with no cure. Those with the mutation live at most into early childhood with a multitude of life threatening conditions (lactic acidosis, ammonia build up, heart abnormalities). Charlie suffers from seizures, cannot independently breathe. He is also blind and deaf. Great Ormond Street Hospital (London) and Charlie’s doctors believe there is nothing more medically that can be done to benefit him and requested to remove his life sustaining treatment. Connie Yates and Chris Gard, his parents, believe that there is a chance of a miraculous cure in an experimental nucleoside treatment in the United States, even though the technique has never been tried for this condition. In the words of the unnamed U.S. specialist, nucleoside treatment would provide a “small hope” for helping

The case has gone through the British courts and the European Court of Human Rights, all of which agreed with the hospital. They declared that prolonging Charlie’s life would be “inhumane and unreasonable.” The courts believed that the experimental treatment in the US would be futile and could cause Charlie much suffering. The European Court ruled on July 4 that life support can be removed on Friday.

Under British law, when parents and physicians disagree on treatment, the courts normally intervene and are the final decision-makers. Unlike in the US, the highest value is the best interest (benefit) to the child rather than parental rights to make decisions for their child.

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 Moral of the Case of Charlie Gard: Give Dying Patients Experimental Treatment … Early

The tragic case of Charlie Gard has captured the imagination of social media, the Pope and President Trump. All of Charlie’s legal options appear to have been exhausted so, despite the tsunami of opinion, it looks like treatment will be withdrawn, barring some act of God or other authority.

I argued back in April  and then in May that it would be reasonable to give Charlie a trial of experimental treatment for a fixed period, say 6 months. The treatment was not going to make him worse and there was a non-zero possibility of some improvement. At the end of 6 months, his progress could have been reviewed and a decision then made to withdraw treatment if no significant progress had been made. I argued that we can’t be certain that his life is not worth living and we can’t be certain treatment will lead to zero improvement. I argued that the costs – 6 months of sedation and analgesia, with limited amounts of suffering associated with medical procedures, was arguably worth taking. That course was not taken.

Worst of All Possible Worlds

Charlie was born in September 2016. He was admitted to hospital in October. By January 2017, his mother had identified an experimental treatment (nucleoside replacement therapy) available in the US.

By April 2017, the Gards had crowd-sourced £1.2million to take Charlie to the US for experimental therapy. However, a judge ruled life is not in his best interests. He must die. Numerous appeals were lodged, and lost, all the way up to the European Court of Human Rights.

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 the Journals – June 2017, part two by Aaron Seaman

The first part of the In the Journals post for June 2017 can be found here. And now, for part two…

 

Medical Humanities

SPECIAL ISSUE: Communicating Mental Health

Introduction: historical contexts to communicating mental health

Rebecca Wynter and Leonard Smith

Contemporary discussions around language, stigma and care in mental health, the messages these elements transmit, and the means through which they have been conveyed, have a long and deep lineage. Recognition and exploration of this lineage can inform how we communicate about mental health going forward, as reflected by the 9 papers which make up this special issue. Our introduction provides some framework for the history of communicating mental health over the past 300 years. We will show that there have been diverse ways and means of describing, disseminating and discussing mental health, in relation both to therapeutic practices and between practitioners, patients and the public. Communicating about mental health, we argue, has been informed by the desire for positive change, as much as by developments in reporting, legislation and technology. However, while the modes of communication have developed, the issues involved remain essentially the same. Most practitioners have sought to understand and to innovate, though not always with positive results. Some lost sight of patients as people; patients have felt and have been ignored or silenced by doctors and carers. Money has always talked, for without adequate investment services and care have suffered, contributing to the stigma surrounding mental illness. While it is certainly ‘time to talk’ to improve experiences, it is also time to change the language that underpins cultural attitudes towards mental illness, time to listen to people with mental health issues and, crucially, time to hear.

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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Charlie Gard: European Court Rejects Plea to Intervene in Life-support Fight

June 30, 2017

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The European court of human rights has rejected an appeal by the parents of a critically ill baby that he should be allowed to undergo experimental treatment in the US.

The decision by the Strasbourg court closes off the last legal avenue of appeal for the family of Charlie Gard and follows a similar ruling by the UK’s supreme court.

The judgment also lifts a court order under which doctors at Great Ormond Street hospital in London had been required to maintain life support treatment for the 10-month-old child who has brain damage and a rare genetic condition.

The hospital said it would not “rush …. to change Charlie’s care” and that any alteration to his current treatment would “involve careful planning and discussion”.

In a statement, the ECHR said it had, by a majority of the seven judges who considered the written arguments, declared the application inadmissible. It “endorsed in substance the approach” taken by the British courts and declared “the decision is final”.

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The Guardian

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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Companies Announce Support for SDG 14 Implementation

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June 2017: Private companies continue to announce support for Sustainable Development Goal 14 (life below water) implementation. Albertsons Companies and Calysta are the latest to relay how they will help the international community meet targets on oceans. Their initiatives focus on sustainable fisheries and aquaculture, in particular, and join announcements from other industry players like Dell, Adidas and the New Plastics Economy, which address marine plastic pollution.

Albertsons Companies, one of the largest US supermarket companies, announced its support for SDG 14. It joined the Seafood Task Force and signed on to the pledge on Committing to Social Responsibility in Global Fisheries and Aquaculture, a voluntary commitment made by the private sectors, NGOs and the UN, during the UN Ocean Conference. The Seafood Task Force, a multi-stakeholder alliance that is combating human rights and environmental issues in seafood supply chains, was initially formed to address issues of forced labor, illegal fishing and human trafficking in Thailand’s seafood supply chains, and aims to serve as a model for global supply chains. Albertsons Companies has already established a Responsible Seafood Policy, which lays out standards that the top wild and farmed seafood products sold by the company are expected to meet.

Calysta, a company that produces sustainable products to improve global food security, pledged to support SDG 14 by advancing technology to promote sustainable aquaculture, which is the world’s fastest growing food production system and is increasing demand for new protein sources. Calysta produces FeedKind protein, a sustainable, traceable and natural feed ingredient that does not rely on wild fish catch.

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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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.

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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.