Tag: standards

Uncategorized

Rethinking the Belmont Report? Yes!

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 Emily Caldes, MA, CIP and Jennifer B McCormick, Ph.D., MPP

As noted by Friesen, Kearns, Redman and Caplan in their review of the Belmont Report, the Belmont Commission tackled the difficult task of distinguishing research from practice. The report defines research activities as those intended to develop or contribute to generalizable knowledge, and it defines practice as activities intended to enhance the well-being of particular individuals or groups of individuals.

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.

Uncategorized

Companies Announce Support for SDG 14 Implementation

Be the first to like.
Share

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.

Uncategorized

Targeted Killing and Black Boxes

Written By Mitt Regan and Michael Robillard

            Various aspects of the US targeted killing program have attracted considerable attention and some criticism in philosophy and international law. One important aspect of the program that deserves more attention is how targeted killing reflects how the growing number of conflicts involving non-state actors are eroding conventions regarding the use of violence.  Those conventions are based on the paradigm of conflict between states waged by uniformed armed forces on segregated battlefields.  In such conflicts, an individual’s status as a member of the armed forces makes him/her liable to lethal force without examining his/her specific conduct.  Non-state actors, however, do not wear uniforms and seek to be indistinguishable from civilians.  What, then, should be the basis for their liability?

While the traditional paradigm is based on status, it contains implicit assumptions about liable conduct.  These are that: (1) an individual in uniform poses a threat and (2) he voluntarily wears a uniform knowing this.  Voluntarily posing a threat is thus the implicit moral basis for liability on the traditional view of jus in bello. International law stipulates that this condition is met for someone in uniform.  Conflicts with non-state actors, however, require that we make this determination for each individual.  The debate over targeting killing vividly highlights that there is no consensus on what behaviour satisfies this condition aside from overt hostility.  In other words, we lack an accepted convention for determining liability to lethal force absent explicit demonstrations of hostile intent.

Seen in this light, the controversy over the US targeted killing program reflects a debate over what this convention should be.

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.

Uncategorized

Advance Care Planning and End of Life (ACPEL) Conference

The program for the 2017 Advance Care Planning and End of Life (ACPEL) Conference in Banff is now available.


Pre-Conference Sessions (Part 1)
Session 1: CRIO 
1. How do people with disabilities perceive advance care planning – Robin Gray, University of Calgary


2. Differences in survey methodology of two Advance Care Planning survey polls conducted in Alberta, Canada – Sunita Ghosh, Alberta Health Services-CancerControl


3. Efficacy of Advance Care Planning and Goals of Care Designations Discussions: A Randomized Controlled Trial and Video Intervention – Maureen Douglas, University of Alberta
  
4. Identification of indicators to monitor successful implementation of Advance Care Planning policies: a modified Delphi study – Patricia Biondo, University of Calgary

5. The economics of advance care planning, Konrad Fassbender, University of Alberta; Covenant Health

Session 2: Health Care Consent, Advance Care Planning, and Goals of Care: The Challenge to Get It Right in Ontario

Health Care Consent, Advance Care Planning, and Goals of Care: The Challenge to Get It Right in Ontario – Tara Walton, Ontario Palliative Care Network Secretariat

Session 3: How to Invite Clinicians to Initiate ACP

1. How to Invite Clinicians to Initiate ACP to Residents, Patients, and Family Carers? – Luc Deliens  
  
2. Development of a complex intervention to support the initiation of advance care planning by general practitioners in patients at risk of deteriorating or dying: a phase 0-1 study – Aline De Vleminck, Free University of Brussels & Ghent University

Pre-Conference Sessions (Part 2)

Session 1: Faith Based Workshop

Inviting the voice of Spirituality within the conversation of Advanced Care Planning – Thomas Butler, Bon Secours Health System Inc.

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.

Uncategorized

Guest Post: Crispr Craze and Crispr Cares

Written by Robert Ranisch, Institute for Ethics and History of Medicine, University of Tuebingen

@RobRanisch

Newly discovered tools for the targeted editing of the genome have been generating talk of a revolution in gene technology for the last five years. The CRISPR/Cas9-method draws most of the attention by enabling a more simple and precise, cheaper and quicker modification of genes in a hitherto unknown measure. Since these so-called molecular scissors can be set to work in just about all organisms, hardly a week goes by without headlines regarding the latest scientific research: Genome editing could keep vegetables looking fresh, eliminate malaria from disease-carrying mosquitoes, replace antibiotics or bring mammoths back to life.

Naturally, the greatest hopes are put into its potential for various medical applications. Despite the media hype, there are no ready-to-use CRISPR gene therapies. However, the first clinical studies are under way in China and have been approved in the USA. Future therapy methods might allow eradicating hereditary illnesses, conquering cancer, or even cure HIV/AIDS. Just this May, results from experiments on mice gave reason to hope for this. In a similar vein, germline intervention is being reconsidered as a realistic option now, although it had long been considered taboo because of how its (side)effects are passed down the generations.

The developmental history of genome editing reveals itself as a recalibration of ethical standards in research. Two years ago, the first-time use of these new tools on (non-viable) embryos in China led to a solid scandal; in retrospect, it is not clear anymore whether the outrage was triggered by ethical concerns or by the circumstance that this (perceived) taboo was broken by China of all countries.

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.

Uncategorized

Helping or hacking? Engineers and ethicists must work together on brain-computer interface technology

A subject plays a computer game as part of a neural security experiment at the University of Washington. Patrick Bennett, Author provided

In the 1995 film “Batman Forever,” the Riddler used 3-D television to secretly access viewers’ most personal thoughts in his hunt for Batman’s true identity. By 2011, the metrics company Nielsen had acquired Neurofocus and had created a “consumer neuroscience” division that uses integrated conscious and unconscious data to track customer decision-making habits. What was once a nefarious scheme in a Hollywood blockbuster seems poised to become a reality.

Recent announcements by Elon Musk and Facebook about brain-computer interface (BCI) technology are just the latest headlines in an ongoing science-fiction-becomes-reality story.

BCIs use brain signals to control objects in the outside world. They’re a potentially world-changing innovation – imagine being paralyzed but able to “reach” for something with a prosthetic arm just by thinking about it. But the revolutionary technology also raises concerns. Here at the University of Washington’s Center for Sensorimotor Neural Engineering (CSNE) we and our colleagues are researching BCI technology – and a crucial part of that includes working on issues such as neuroethics and neural security. Ethicists and engineers are working together to understand and quantify risks and develop ways to protect the public now.

Picking up on P300 signals

All BCI technology relies on being able to collect information from a brain that a device can then use or act on in some way. There are numerous places from which signals can be recorded, as well as infinite ways the data can be analyzed, so there are many possibilities for how a BCI can be used.

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.

Uncategorized

Human Milk Banking in Guatemala City: All for All

Martha Paynter compares human milk banking practices in Guatemala City and Atlantic Canada.

__________________________________________

Last month, non-profit human milk banking staff and researchers from across the continent met in Dallas for the Human Milk Banking of North America 2017 Symposium to share best practices and new developments. The use of human donor milk is growing and non-profit banks must compete with for-profit enterprises and private milk markets. Human donor milk health and safety standards in North America continue to evolve in response to scientific evidence, epidemiological developments such as Zika, and funding changes including the recent Medicaid coverage for banked milk in New York State. While we adapt processes and goals for milk banking in North America, it is worth examining alternative models of milk bank operations.

In Atlantic Canada, for example, three level-3 Neonatal Intensive Care Units (NICU) provide human donor milk to infants under 1500 grams who are unable to receive sufficient milk from their own mothers. The milk is purchased at approximately $5/ounce, including shipping, from the Northern Star Mothers Milk Bank in Calgary. Northern Star is a private, community-based non-profit business. Milk is collected from healthy volunteer lactating women across Canada who meet donor criteria. Donors may take some medications, but not pharmaceuticals or herbs to promote lactation. Donors ship the frozen milk by courier to Northern Star, where it is pasteurized and distributed to NICUs, inpatients and outpatients across the country according to need and availability. Since opening in 2012, Northern Star has distributed over 500,000 ounces of milk.

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.

Uncategorized

Canada Today: End-of-Life Stories

In summary, this is a brief article consisting of multiple short stories. They particularly provide perspectives of patients in Canada who have faced end-of-life situations. Based on Catherine Porter’s article, there are various contextual motives behind these patients’ decisions to discontinue treatment or choose euthanasia. However, there is a common, general theme for such clinical practices. For example, a patient named June Vaile had been suffering from near-total blindness due to macular degeneration.

Subsequently, her learning of having colon cancer was a relief to her. Knowing this was an opportunity to attain medically-assisted suicide, Vaile sought this to end the misery associated with her inability to enjoy her life pursuits resulting from her former condition. Likewise, a patient named Eva McLeod was also diagnosed with cancer. Prior to such revelation, however, her mother had passed away. Already distraught, and fearing continued emotional pain from the onset, she viewed euthanasia as a palatable means to the end of suffering.

These two patients demonstrate that death is not always a immoral type of action in itself. The overall life circumstances of a patient may be too severe to warrant the continuation of a functional, healthy life. Therefore, death may be justified. This affirms the humanity through beneficence and non-maleficence in compliance with societal moral standards and our obligations to patients. Thus, patient narratives are very important. Such provides a personal, humanistic viewpoint to the identity that patients present in the clinical setting. Consequently, in the case of end-of-life situations, healthcare professionals are empowered to become more compassionate and prepared to serve the greater welfare of the patients and practices moving forward.

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.

Uncategorized

In Calls for Repeal Comes Opportunity for Universal Coverage

by Craig Klugman, Ph.D.

According to the conservative press, the Affordable Care Act is failing. They point to the number of insurance companies that have withdrawn from the marketplaces including Ohio, where there are 20 counties with no plans available. They point to rising premiums and co-pays, and consider the experiment a failure that must be repealed. Of course, they are not considering the cost savings that preventive care provides in the longer term or the improved quality of life in having medical care. Those reports also ignore that the federal government has been giving confusing messages, rolling back the supportive regulations and subsidies, and that the healthcare industry is trying to adapt to a shifting landscape. Nor do they talk about the lowest rate of uninsured ever, the increase in people able to see doctors, the decrease in hospital’s unreimbursed care, the decrease in national health care spending, and the decreasing inflation rate of medical costs.

In a recent meeting between the executive and (Republican) legislative branches, there is a renewed call to repeal the Affordable Care Act. What is a state to do that has to create a budget and does not know what the health care laws will be or even what federal funds might be available for helping provide care? Some states are not waiting around for repeal and replace but are taking matters in their own hands. New York, California, and Nevada may soon be on the way to single payer health systems. And if Republicans are true to their states rights roots, then letting states design and run their own systems should be a good thing.

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.

Uncategorized

Food Waste Charity May Be Prosecuted Over Out-Of-Date Produce

A charity that campaigns against food waste may face prosecution after a trading standards inspection found produce that was past its use-by date at one of its warehouses

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.