Tag: research

Bioethics News

Striking a Balance

By Peter Young

 

In April of this year, the Berman Institute and Johns Hopkins Hospital Ethics Committee held its monthly Ethics for Lunch case presentation focusing on how to manage patients who make racist, sexist, and otherwise offensive comments. The discussion, moderated by Dr. Joseph Carrese, featured panelists who have experienced racism/sexism in the clinic, and it allowed audience to gain insight from their perspectives.

 

During the discussion, there was mention that minority patients in an in-patient setting cannot choose their own doctor based solely on race, because Hopkins’ practice is to pair the best doctor with a patient’s medical needs. I was a bit confused how minority patients not being able to choose race-based concordance in an in-patient setting fits into the larger, nation-wide conversation of minority groups wanting safe spaces. For example, some argue the race of the physician affects the quality of care, and when the provider and patient’s race align, the provider can speak better to certain beliefs, religious practices, nutritional knowledge, and cultural norms. Also, there may be even subtler, yet equally important benefits of having your provider look like you, especially in our current political climate. This includes patient-compliance as well as the potential for less polarizing power dynamics in the provider-patient relationship.

 

Scholars like Dr. Dayna Bowen Matthew, author of Just Medicine and professor at University of Colorado, might argue that if a white, middle-class person tells an intercity, minority person to take their medication, that patient may be less likely to adhere.

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

ASBH Lifetime Achievement Awards & Cornerstone Awards – Bioethics and Medical Humanities

Lifetime Achievement Awards

ASBH announces two Lifetime Achievement Awards for longstanding achievement by an individual in bioethics and/or the medical humanities. Both recipients will make remarks at the 2017 ASBH Members’ Meeting and Award Presentations, Friday, October 30, 3:45 pm in Kansas City, MO.

Myra Christopher is recognized as the first leader of the Center for Practical Bioethics (CPB), an applied, real-world bioethics organization emphasizing ethics and action informed by thoughtful reflection, guided by academic discipline. Christopher’s work has changed how shared decision making among families helps to match the care a loved one receives with his or her wishes, how hospital ethics committees respect and advocate for the rights of patients, and how communities care for those with terminal illness.

Steven Miles, MD is honored for three and a half decades of research and education. He has published 6 books and over 160 articles and chapters on a breathtaking array of issues, an extraordinary contribution to bioethics scholarship. His career is also distinguished by the impact of his work beyond academia and his devotion to the reform needed to alleviate suffering, especially in contexts affecting the most vulnerable members of our global society.

Cornerstone Awards

ASBH announces two Cornerstone Awards for enduring contributions by an institution to the fields of bioethics and/or the medical humanities. These awards will be presented at the 2017 ASBH Members’ Meeting and Award Presentations.

For over 25 years, The ANA Center for Ethics and Human Rights has advocated for social justice and the protection of human rights and tirelessly provided ethical guidance, both theoretical and practical, at the state, national, and international levels.

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

‘A bit of a compromise’: Coming to terms with an emergency caesarean section by Terena Koster

During the midwife-hosted antenatal class Cath attended in a private hospital in Cape Town, South Africa, where she would eventually give birth, pregnant women were encouraged to name the kind of birth they wanted. They were presented with three options: “natural all the way with no medication”, “natural but open to medication”, or “elective caesarean”. The ‘choice’ women were expected to make featured as an important point of concern in their antenatal care and in their preparations for birth.

Hannah, a participant in the class, recalls a particularly striking moment when the midwife went around the room and pointed at each of the participants and asked, “Who is your gynae”. She went on to predict diverse birth outcomes, irrespective of participants’ stated intentions to birth vaginally. For Hannah this was an “eye opening” experience. A first time mother, she was now invited into a highly politicised birthing environment. Hannah had been uncertain about what kind of birth she wanted, but at 8 months pregnant she had decided on a ‘natural’ birth as opposed to a ‘caesarean’, with the caveat that in the event that an emergency caesarean section was a likely outcome, she would proactively opt for an elective caesarean.

At 39 weeks and near the end of her pregnancy, she found herself sitting opposite her obstetrician who told her there was “a real threat of the umbilical cord wrapping around [the baby’s] neck as she … drop[s] down,” adding that because the baby was “so big” there was “a high likelihood of [Hannah] tearing”. For the first time, the obstetrician instructed her to make a birthing decision: to continue trying for a vaginal birth or to opt for an elective caesarean section.

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

Press Release – “Vale Charlie” Prof Julian Savulescu

Vale Charlie

At some point in all of our lives, we have to let go. One can only admire Connie Yates and Chris Gard who fought so hard for Charlie.

 

However, we should continue to question the original decision, and the way in which these decisions are made. Even if it is too late for Charlie now, we should improve how we make these decisions for the future.

Back in January, there was an option for a trial of treatment that had some chance of success, a world leading doctor willing and able to provide it, and, by April, the funds had been raised to achieve it without public funds. There were also the means to control and minimise Charlie’s suffering. I believe that a limited trial of treatment was in Charlie’s interests back then, given the only alternative for him was death.

 

Doctors opposed this because of the low chance of success combined with fears that the extra time in life support would be too painful.

 

4 months of the legal process has left us with no trial of treatment, and no chance now for Charlie. Yet Charlie had to go through all the suffering (and more) of being kept alive on life support.

 

No-one wanted this outcome. No-one believes this outcome was in Charlie’s best interests. There has got to be a better process. It has been traumatic for all the doctors, who have genuinely had Charlie’s interests at heart, and Connie and Chris, but most of all Charlie.

It has also raised other issues.

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

Recent findings. Children conceived through assisted reproduction, now adolescents, have more medical problems

These recent findings should be taken into consideration when making an ethical assessment of assisted reproduction.

An issue that often arises is whether children conceived through assisted reproductive technique – ART (see HERE) present more medical and/or mental health problems when they reach adolescence than those conceived naturally. A recent study (see Abstract) that evaluated the development of 253 adolescents conceived using assisted reproductive techniques compared to a similar group of adolescents conceived naturally found that “no differences were detected in general and mental health of ART adolescents or cognitive ability, compared with the reference group.” However, “follow-up […] revealed that male ART adolescents had significantly more doctor’s appointments compared with the reference group.” Nonetheless, the authors point out that further studies with larger cohorts are needed to confirm these results.

Findings detect a higher risk of cardiovascular disease and higher blood pressure

In a second study, also published in Fertility and Sterility, more metabolic and cardiovascular disorders were detected in children conceived by ART. This systematic review and meta-analysis examined 19 studies that included 2,112 ART-conceived and 4,096 naturally-conceived children, who were followed to adulthood. It found that the blood pressure of those conceived by ART was statistically higher than those conceived naturally. Furthermore, the cardiac diastolic function was suboptimal and blood vessel thickness was higher.

Conclusion

The authors conclude that their findings suggest a higher risk of cardiovascular disease in children conceived by ART, which calls for further research to be able to corroborate these data.

There is no doubt that these findings should be taken into consideration when making an ethical assessment of assisted reproduction.

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

PLOS Neglected Tropical Diseases Vectors Collection: A Call for Papers

PLOS Neglected Tropical Diseases announces a collection on vector-borne diseases. Research submissions are now being invited, with a deadline of January 1, 2018. As previously noted in PLOS Neglected Tropical Diseases (NTDs), while the last

Source: Speaking of Medicine, blog of the Public Library of Science.

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

Call for HCEC Certification Commission Members

In Spring 2017, ASBH successfully completed market research and a role delineation survey, which are critical steps in the development of a sustainable and credible certification program. In July 2017, the ASBH board agreed to appoint an HCEC Certification Commission with responsibility for the development and administration of a certification program. 


For appointment to the Commission, ASBH seeks 3-5 clinical ethics consultants who reflect the interests of the general public in the availability and implementation of an HCEC credential and are representative of the stakeholder groups, including community hospitals and regional health systems, that have an interest in the quality, governance, and operation of the certification program. (The ASBH board will also appoint one member who represents the public or non-employer consumer interest.) The Commission is expected to meet face-to-face for at least one and possibly two 1-2 day meetings and 2-3 conference calls in the coming year.


Appointments will be for initial 1-year terms that may be renewed for a total of no more than 3 years of continuous service. In its first year, the commission will develop a detailed marketing plan and budget; select a testing company; initiate a call for volunteers and select item (exam question) writers for an entry-level exam based on the role delineation study; determine eligibility criteria and develop policies and procedures; and plan for the administration of the first exam. For this purpose, ASBH seeks clinical ethics consultants with relevant experience in governance, program management, and/or marketing. 


ASBH members who are interested in being considered for this work are invited to send
1.

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

Keeping the Intersections of IBCs, IACUCs, and IRBs from Turning into Roadblocks

PRIM&R’s IBC Boot Camp, which takes place September 18-19 in Denver, CO, will provide information, tools, and guidance for IBC, IRB, and IACUC professionals to help them keep compliance intersections from turning into compliance roadblocks. Attendees will learn strategies for improving integration and communication among regulatory groups and investigators to best support research that is ethical, collaborative, and interdisciplinary. IBC personnel will have opportunities for benchmarking, sharing resources such as SOPs, and networking with colleagues in the field.

The post Keeping the Intersections of IBCs, IACUCs, and IRBs from Turning into Roadblocks appeared first on Ampersand.

Source: Ampersand, the blog of PRIM&R.

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

More about Charlie Gard

Dr. Robert Truog, the bioethicist and transplant physician who has pushed the envelope on the definition of death, has weighed in on the Charlie Gard case in a “Perspectives” piece that is generally available (i.e., without a subscription) from the Journal of the American Medical Association (JAMA).   By all means read it.

Dr. Truog approaches the case from the standpoint of limiting medical research—indeed, that’s in the title of his article.  He says the case is about “the best interest of the patient, financial interest, and scientific validity.”  On the first point, he is cautious about the British courts’ assertions that it can assess how much pain and suffering Charlie is experiencing, and whether the courts know this better than the baby’s patients.  This caution seems wise.  As I have reflected further on this case it strikes me that I may be missing a legal distinction between Britain and the US; frankly, I am not well-versed on British law in these cases.  I do tend to think of the Gard case in terms of substituted decision-making in the case of severe or terminal illness.  My thought process runs through the checkpoints.  First, the patient’s wishes are paramount.  In this case, the patient cannot express wishes and may not be able to form them.  In that case, second, a surrogate decision-maker should speak for the patient using “substituted judgment” or “substituted perspective” to express how the patient might have approached the case if able to express wishes.  Here, the parents are available to speak for the patient.  It would be only in the absence of a decision surrogate that “the best interests of the patient,” as judged by the physicians or the courts, would control.  Apparently British law grants rather more primacy to third parties, other than the patient and any surrogate decision-maker.  Under the rubric I’m used to, the parent’s wishes would control.  Here, the British authorities argue, they do not.

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

Refugees, Narratives, or How To Do Bad Things with Words

By Anna Gotlib

ABSTRACT. This paper addresses and critiques the anti-refugee rhetoric and policies, as well as their uncritical uptake, which developed around the candidacy of Donald Trump. My intent is to examine some of this election’s cruelest, most violent, and most racist rhetoric, reserved for Syrian (and other) refugees, and to consider some possible responses to such speech in the future. To that end, I problematize the representations and treatment of refugees within the United States from three distinct groups: European Jewish refugees of the Second World War; the Eastern Bloc refugees of the mid- and late twentieth century; and the current Syrian, largely Muslim refugees. I begin by defining the concepts of homelessness and moral luck. Second, I examine the three varying histories of refugee policies in the context of these two notions. Finally, I conclude with a combination of despair and hope: First, I offer a few observations about the role of language in the recent presidential election; second, I propose alternatives to the resulting linguistic and political violence by extending Hilde Lindemann’s notion of “holding” into sociopolitical contexts.

“How odd I can have all this inside me and to you it’s just words.”
― David Foster Wallace, The Pale King

I.  Introduction

The American election of 2016 was, in its vitriol, polarization, and outcome, unlike any in recent memory. This paper addresses and critiques the anti-refugee rhetoric and policies, as well as their uncritical uptake, which developed around the candidacy of Donald Trump. My intent is to examine and confront the fact that some of this election cycle’s cruelest, most violent, and most racist rhetoric was reserved for Syrian (and other) refugees, and to consider some possible responses to such speech in the future.

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.