Tag: health

Bioethics Blogs

Hard lessons: learning from the Charlie Gard case

by Dominic Wilkinson and Julian Savulescu

 

On the 24th July 2017, the long-running, deeply tragic and emotionally fraught case of Charlie Gard reached its sad conclusion (Box 1). Following further medical assessment of the infant, Charlie’s parents and doctors finally reached agreement that continuing medical treatment was not in Charlie’s best interests. It is expected that life support will be withdrawn in the days ahead.

Over the course of multiple hearings at different levels of the court in both London and Strasbourg, the Charlie Gard case has raised a number of vexed ethical questions (Box 2). The important role of practical ethics in cases like this is to help clarify the key concepts, identify central ethical questions, separate them from questions of scientific fact and subject arguments to critical scrutiny. We have disagreed about the right course of action for Charlie Gard,1 2 but we agree on the key ethical principles as well as the role of ethical analysis and the importance of robust and informed debate. Ethics is not about personal opinion – but about argument, reasons, and rational reflection. While the lasting ramifications of the case for medical treatment decisions in children are yet to become apparent, we here outline some of the potential lessons.

1. Parents’ role in decision-making for children: We need to clarify harm

Much of the media attention to the Gard case has focussed on the rights of parents in decision-making for children, and whether the intervention of the courts in this case means that doctors frequently overrule parents in the UK.

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

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

When a doctor calls a patient a racial slur, who is hurt?

by Keisha Ray, Ph.D.

Last week Lexi Carter, a black woman from Tennessee had an experience that so many other black people have had, a racially charged visit with a doctor. When Carter walked into her doctor’s office, Dr. James Turner greeted her with “Hi Aunt Jemima.” During the visit, he proceeded to call her Aunt Jemima more than once. Carter’s encounter with Dr. Turner is problematic for many reasons: 1. The term “Aunt Jemima,” which is the name of a popular syrup and pancake mix whose packaging depicts the face of a black woman, has a long history of racism dating back to the late 1800s; 2. Dr. Turner made these remarks in front a physician assistant trainee and a student who are still learning about the field of medicine; 3. After admitting to making the remark, Dr. Turner said that the term “was not intended to show disrespect for Ms. Carter,” calling it a “misspoken blunder.”

Aunt Jemima is a reflection of the “mammy” archetype that can be found in films, television shows, and literature (e.g. Calpurnia in “To Kill a Mocking bird” or Mammie in “Gone with the Wind”). The archetype depicts a larger black woman who is usually wearing an apron over a tattered dress, her hair is usually tied up with a scarf of some sort (typical of black slaves who tied their hair up to help protect from lice). The mammie character is also typically responsible for caring for the homes and children of white slave owners (i.e. house slaves), and who speaks using vernacular typical of uneducated black slaves, a vernacular that is usually mocked for being simple and unrefined unlike that of the vernacular of white people.

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

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

Claudia Pagliari on ‘The Week in Health Law’ Podcast

By Nicolas Terry and Frank Pasquale Subscribe to TWIHL here! On another international episode of the Pod we chat with Claudia Pagliari, Senior Lecturer in Primary Care and Informatics and Director of Global eHealth at Edinburgh University in the UK. A psychologist by training she … Continue reading

Source: Bill of Health, examining the intersection of law and health care, biotech & 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

To Shrink Mosquito Population, Scientists Are Releasing 20 Million Mosquitoes

July 21, 2017

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This summer, scientists in California are releasing 20 million mosquitoes in an effort to shrink the population of mosquitoes that can carry diseases.

It sounds counterintuitive. But the plan is to release millions of sterile male mosquitoes, which will then mate with wild female mosquitoes. The eggs the females lay won’t hatch, researchers say.

The project is called Debug Fresno and it’s being undertaken by Verily, a subsidiary of Alphabet, Google’s holding company. It’s the company’s first field study involving sterile mosquitoes in the U.S.

Scientists say the goal is to cut the population of Aedes aegypti mosquitoes — the species responsible for spreading Zika, dengue and chikungunya. A. aegypti have been present in California’s Central Valley since 2013 and have been a problem in Fresno County.

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NPR The Two-Way

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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

Cholera Is Slaughtering Yemen and We’re Letting It Happen

July 21, 2017

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But the Haitian debacle, in which United Nations Peacekeepers carried the Vibrio cholerae in their bodies from Nepal, passing the bacteria into local streams to spawn a massive epidemic that continues today, spread in a nation shattered by natural disaster. There is nothing “natural” about the carnage of Yemen: This is war, waged from 10,000 feet by Saudi bombers that have damaged or destroyed every hospital, clinic, water treatment plant, pumping station, and sewer system from Sanaa to Ibb.

According to the World Health Organization (WHO), 14.5 million Yemenis no longer have access to clean water: Cholera is a water-borne disease. UN officials reckon 17 million Yemenis are “one step away from famine,” civil war rages across the land, the region is locked in a climate change-compounded record drought, and the country’s Arab neighbors feed the flames with steady flows of arms and carpet-bombing campaigns.

Every day the WHO issues a new, always grimmer data set, estimating the toll cholera is taking. Inside the country, humanitarian groups and Yemeni medical personnel stack ailing men, women, and children three and four to a bed, hooking each one up to life-sparing hydration IV drips, even as the sound of gunfire and bombings resonate outside meager facilities.

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Image: By yeowatzup from Katlenburg-Lindau, Germany – San’a, Yemen, CC BY 2.0, https://commons.wikimedia.org/w/index.php?curid=24520831

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Fortune

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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.