Tag: practice guidelines

Bioethics Blogs

American Nurses Association Supports VSED

Too few medical associations have issued either practice guidelines or policies on VSED. Fortunately, the American Nurses Association issued a favorable position statement this summer. 


The ANA concludes: “VSED at the end of life is used to hasten death, and is a reflection of autonomy and the patient’s desire for control.”

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

A medical, legal and ethical approach of paediatric euthanasia in Belgium

We believe it interesting to refer to an article published in JAMA (311, 1963-1964) last May, which discussed various aspects of paediatric euthanasia en Belgium.

On 13 February 2014, the Belgian Parliament approved an amendment to the Act regulating euthanasia in Belgium, in order to legalise euthanasia in children with serious illnesses. The amendment in question, supported by the majority of Belgians and recently signed into law by King Philippe, will allow euthanasia in children who are permanently in severe pain. As in all cases of euthanasia, parental consent will be required, and it will exclude children with intellectual disabilities or mental illnesses and must be approved by a multidisciplinary medical team, who will carefully assess the mental capacity of these children.

The approval of this law marks the culmination of the gradual acceptance of euthanasia in Belgium. To date, the Netherlands, Belgium and Luxemburg are the only countries in the European Union in which euthanasia is legal.

Euthanasia for adults has been legal in Belgium since May 2002, unlike paediatric euthanasia. A preliminary study examining the opinion of physicians on child euthanasia showed that 69% were in favour of legalising it.

In March 2005, recognising that euthanasia in children was rising, without the due legal protection, doctors from the University of Groningen in the Netherlands published practice guidelines for euthanasia in severely disabled newborns. This document is in favour of the legalisation of active euthanasia in children “with a hopeless prognosis who experience […] unbearable suffering”. The protocol specifies that terminating the life of these children may be acceptable if four requirements are met: a) the presence of hopeless and unbearable suffering; b) the consent of both parents; c) consultation with physicians; and d) that the procedure for terminating the life of these children be in accordance with medical standards.

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

New Jersey Proposes Amending Brain Death Regulations

The New Jersey Division of Consumer Affairs has proposed amendments to regulations regarding the declaration of brain death in a patient.   

The proposal effectuates P.L. 2013, c. 185 and will amend Board regulations to no longer set forth specific tests that physicians must perform prior to declaring brain death.  Under the proposed amendments, physicians will be required to comply with nationally recognized practice guidelines for declaring brain death.

The proposed regulation, and information on how to submit a comment by March 4, 2017, can be viewed here.  

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

CFAS Guidelines on Third Party Reproduction

Vanessa Gruben argues that the Canadian Fertility and Andrology Society’s Guidelines on Third Party Reproduction offers important information for patients and the public about third party reproduction.

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The Canadian Fertility and Andrology Society (CFAS) recently published Clinical Practice Guidelines on Third Party Reproduction (Practice Guidelines). Third party reproduction refers to the use of sperm, eggs or embryos from a third party donor(s) or the use of a surrogate to build a family. Third party reproduction allows either individuals or couples to attain a pregnancy where they are unable to do so using their own gametes or uterus. This includes people who are suffering from medical infertility as well as LGBT families and single parents by choice.

The Practice Guidelines address many aspects of third party reproduction including, medical and infectious disease screening of donors, providers and surrogates,  the retention medical records, psychological counselling, and independent legal counsel. While not legally binding per se, these Practice Guidelines seek to fill in glaring legal gaps and offer greater certainty in clinical practice.

Take, for example, the retention of third party donor medical records. The current law in Ontario requires that medical records be kept for ten years from the date of the last entry in the record and the College of Physicians and Surgeons of Ontario recommends that physicians retain medical records for 15 years. Yet neither the law nor the College recommendations take into account the possibility that a donor conceived person may require access to his or her donor’s medical record well past either of these time lines because of the important information it contains about the donor conceived person’s family medical history.

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

Joanna Kempner’s Not Tonight: Migraine and the Politics of Gender and Health by Christine Labuski

Not Tonight: Migraine and the Politics of Gender and Health

Joanna Kempner

University of Chicago Press, 2014, 232 pages

In her thoroughly engaging new book, Not Tonight: Migraine and the Politics of Gender and Health, Joanna Kempner argues that, despite a new clinical paradigm through which migraine has been transformed from a psychogenic to a neurobiological disorder, the condition remains “an opportunity to make jokes about moral character” (2). Grounding this assertion in the concept of a “legitimacy deficit,” (9) i.e., a gap between what sufferers experience and what biomedicine and broader society formally recognize as illness, Not Tonight demonstrates the synergistic roles that gender and perceptions of moral character can play in the lived experience of a disease condition, including its clinical management and representation. At its core, the book reveals how the virtual incompatibility between high moral character and a feminine gender impedes the social and clinical apprehension of migraine as a “real” disease condition.

Not Tonight is a fairly wide-ranging text. Across five chapters (each of which stand alone on their own merits), Kempner presents a set of interlocking variables through which the condition of migraine has thus far been understood: its social and clinical history; recent pharmaceutical advertising campaigns; online advocacy and activism; and the recent neurobiological turn in migraine care. In addition to online forums and blogs, much of Kempner’s fieldwork took place at clinical conferences where (mostly female) patients—as proxies for the specialty of headache medicine—were routinely maligned by clinicians, and where the neurobiological paradigm at the heart of her analysis has become institutionalized.

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

In the Journals – June 2016, Part I by Anna Zogas

Here are some articles published in June that may be of interest. Enjoy!

Medical Anthropology Quarterly

Cancer and the Comics: Graphic Narratives and Biolegitimate Lives
Juliet McMullin

Cancer graphic narratives, I argue, are part of a medical imaginary that includes representations of difference and biomedical technology that engage Fassin’s (2009) concept of biolegitimacy. Framed in three parts, the argument first draws on discourses about cancer graphic narratives from graphic medicine scholars and authors to demonstrate a construction of universal suffering. Second, I examine tropes of hope and difference as a biotechnical embrace. Finally, I consider biosociality within the context of this imaginary and the construction of a meaningful life. Autobiographical graphic narrative as a creative genre that seeks to give voice to individual illness experiences in the context of biomedicine raises anthropological questions about the interplay between the ordinary and biolegitmate. Cancer graphic narratives deconstruct the big events to demonstrate the ordinary ways that a life constructed as different becomes valued through access to medical technologies.

“Time with Babe”: Seeing Fetal Remains after Pregnancy Termination for Impairment
Lisa M. Mitchell

Some North American hospitals now offer parents the opportunity to see, hold, and photograph fetal remains after pregnancy loss. I explore the social, material, and interpretive strategies mobilized to create this fetal visibility after second trimester–induced abortion for fetal anomaly. My analysis examines both the discursive framing of fetal remains in practice guidelines on pregnancy loss and the responses of a group of Canadian women to being offered “time with babe.” I show that while guidelines tend to frame contact with fetal remains as a response to women’s desires to see their baby and to feel like mothers, women’s experiences of this contact were shaped by more diverse wishes and concerns as well as by specific abortion practices and practitioner comments and actions.

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

A New Edition of European Journal of Human Genetics Is Now Available

May 12, 2016

European Journal of Human Genetics (vol. 24, no. 4, 2016) is available online by subscription only.

Articles include:

  • “The Improvement of the Best Practice Guidelines for Preimplantation Genetic Diagnosis of Cystic Fibrosis: Toward an International Consensus” by Anne Girardet, et al.
  • “EMQN Best Practice Guidelines for the Molecular Genetic diagnosis of Hereditary Hemochromatosis (HH)” by Graca Porto, et al.
  • “Impact of Presymptomatic Genetic Testing on Young Adults: A Systematic Review” by Lea Godino, et al.
  • “The Need to Develop an Evidence Base for Genetic Counselling in Europe” by Marion McAllister, et al.

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

Canada is a booming foreign surrogacy destination

Pamela M. White recounts the ways that Canada is described at a recent surrogacy conference in the United Kingdom.

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Canada’s low dollar, excellent IVF fertility clinics, equality of access regardless of sexual orientation or marital status, and benign legal climate makes Canada an ideal surrogacy destination. This is what Dr. Clifford Librach, Director at CReATe fertility clinic in Toronto and Cindy Wasser, a lawyer at Hope Springs Fertility Law also in Toronto, told an audience of prospective commissioning parents at a recent surrogacy conference in London, England.

Wasser also told the audience that Canada’s “wonderful universal health care system” covers the costs of prenatal care for surrogates. She noted however, that some hospital charges and medical care costs incurred by the infant may need to be paid by the commissioning parents, depending upon the province in which the birth occurs. She assured the audience that so long as the surrogate’s consent, parentage documentation, and citizenship paperwork was in order, commissioning parents who worked with a knowledgeable fertility lawyer should be back home with the baby in about three to four weeks following the birth. She suggested that arranging surrogates birth in British Columbia, Alberta, and Ontario offers clear advantages in this regard.

In response to questions asked by conference attendees, Wasser also warned of some of the so-called “downsides” of traveling to Canada for surrogacy. This includes Canada’s prohibition on sex selection and the difficulty in securing a twin surrogate pregnancy, because of practice guidelines which favour single embryo transfers for IVF. Commissioning parents who want twins were advised that British Columbia or Alberta may be their best option because these two provinces have yet to charge foreign commissioning parents for a hospital surrogate birth or infant medical care.

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

Obesity Research: Study Shows Significant Benefits of Modest Weight Loss

For the one in three American adults who are obese, recommendations to lose substantial amounts of weight through a combination of diet and exercise can seem daunting and, at times, hopeless. But a new study should come as encouraging news for all those struggling to lose the extra pounds: even a modest goal of 5 percent weight loss delivers considerable health benefits.

In the NIH-funded study, people with obesity who lost just 5 percent of their body weight—about 12 pounds on average—showed improvements in several risk factors for type 2 diabetes and heart disease. They also showed metabolic improvements in many parts of the body, including the liver, pancreas, muscle, and fat tissue. While people who lost additional weight enjoyed further improvements in their health, the findings reported in the journal Cell Metabolism show that sometimes it really does pay to start small [1].

Doctors today often recommend that their patients who are obese lose 5 to 10 percent of their weight in accordance with current treatment guidelines [2]. While these guidelines are quite helpful, many individuals find that loss of 10 percent is a very difficult challenge, and it’s been unclear how much of a boost patients might receive to their metabolism and heart health by aiming for the more achievable goal of 5 percent.

To find out, Samuel Klein of Washington University School of Medicine, St. Louis, and his colleagues randomly assigned 40 obese women and men to one of two groups. In one group, participants maintained their body weight. In the other, they cut their calories and ate “self-prepared foods” to lose 5 percent, 10 percent, or 15 percent of their weight.

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

Fordham RETI Fellows Present at PRIM&R Annual Meeting

Dr. Erin Bonar, Dr. Faith Fletcher, and Dr. Celia B. Fisher at the PRIM&R Annual Meeting 2015. Photo courtesy Dr. Sue Fish

The Fordham HIV and Drug Abuse Prevention Research Ethics Training Institute (RETI) was well-represented at the Public Responsibility in Medicine and Research (PRIM&R) Annual Meeting in Boston, November 12-15, with faculty and fellows presenting on their institute-funded research.

RETI Director Dr. Celia B. Fisher and Cohort 4 fellows Dr. Erin Bonar and Dr. Faith Fletcher presented a session entitled, “Enhancing the Responsible Conduct of Adolescent and Young Adult Health Research through Empirical Studies on Research Ethics.”

This session featured presentations describing empirical studies on research ethics issues that can help IRBs evaluate human subjects protections for health research involving adolescents and young adults. The research described draws on the perspectives of adolescents and parents to illuminate opportunities and barriers to the responsible conduct of HIV, drug use, and mental health research.

During this session, Bonar reviewed how mixed-method research (surveys and interviews) can illuminate best practices for assessing risks and benefits and protecting confidentiality in mobile health-based research on drug use and sexual risk among emerging adults. In addition, Fletcher described how empirical data on African American mothers’ and daughters’ attitudes toward adolescent participation in HIV biomedical prevention trials can inform IRB evaluations of research vulnerability. Finally, Fisher outline how to evaluate ethical justifications for requests to waive guardian permission using data from an innovative, web-based, asynchronous focus group methodology that examined ethical barriers and facilitators to lesbian, gay, bisexual and transgender (LGBT) youth participation in HIV prevention medication adherence trials.

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.