Tag: minors

Bioethics Blogs

Does Female Genital Mutilation Have Health Benefits? The Problem with Medicalizing Morality

By Brian D. Earp (@briandavidearp)

Please note: this piece was originally published in Quillette Magazine.

 

Four members of the Dawoodi Bohra sect of Islam living in Detroit, Michigan have recently been indicted on charges of female genital mutilation (FGM). This is the first time the US government has prosecuted an “FGM” case since a federal law was passed in 1996. The world is watching to see how the case turns out.

A lot is at stake here. Multiculturalism, religious freedom, the limits of tolerance; the scope of children’s—and minority group—rights; the credibility of scientific research; even the very concept of “harm.”

To see how these pieces fit together, I need to describe the alleged crime.

* * *

The term “FGM” is likely to bring to mind the most severe forms of female genital cutting, such as clitoridectomy or infibulation (partial sewing up of the vaginal opening). But the World Health Organization (WHO) actually recognizes four main categories of FGM, covering dozens of different procedures.

One of the more “minor” forms is called a “ritual nick.” This practice, which I have argued elsewhere should not be performed on children, involves pricking the foreskin or “hood” of the clitoris to release a drop of blood.

Healthy tissue is not typically removed by this procedure, which is often done by trained clinicians in the communities where it is common. Long-term adverse health consequences are believed to be rare.

Here is why this matters. Initial, albeit conflicting reports suggest that the Dawoodi Bohra engage in this, or a similar, more limited form of female genital cutting – not the more extreme forms that are often highlighted in the Western media.

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

Does Female Genital Mutilation Have Health Benefits? The Problem with Medicalizing Morality

Does Female Genital Mutilation Have Health Benefits? The Problem with Medicalizing Morality

By Brian D. Earp (@briandavidearp)

Please note: this piece was originally published in Quillette Magazine.

 

Four members of the Dawoodi Bohra sect of Islam living in Detroit, Michigan have recently been indicted on charges of female genital mutilation (FGM). This is the first time the US government has prosecuted an “FGM” case since a federal law was passed in 1996. The world is watching to see how the case turns out.

A lot is at stake here. Multiculturalism, religious freedom, the limits of tolerance; the scope of children’s—and minority group—rights; the credibility of scientific research; even the very concept of “harm.”

To see how these pieces fit together, I need to describe the alleged crime.

* * *

The term “FGM” is likely to bring to mind the most severe forms of female genital cutting, such as clitoridectomy or infibulation (partial sewing up of the vaginal opening). But the World Health Organization (WHO) actually recognizes four main categories of FGM, covering dozens of different procedures.

One of the more “minor” forms is called a “ritual nick.” This practice, which I have argued elsewhere should not be performed on children, involves pricking the foreskin or “hood” of the clitoris to release a drop of blood.

Healthy tissue is not typically removed by this procedure, which is often done by trained clinicians in the communities where it is common. Long-term adverse health consequences are believed to be rare.

Here is why this matters. Initial, albeit conflicting reports suggest that the Dawoodi Bohra engage in this, or a similar, more limited form of female genital cutting – not the more extreme forms that are often highlighted in the Western media.

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

Heads Up: Time to Say Goodbye to Football

by Craig Klugman, Ph.D.

Suppose a prescribed drug caused brain damage in 99.1% of people who took it. Would you take the drug? How long before that drug was pulled from the marketplace and the lawsuits against the manufacturer began? What if that drug made the company $7.2 billion per year? What if those who took the drug became celebrities for a brief period of time? Would you consider taking it then? Most rational people would refrain from the medication and the FDA would remove it from the market.

If you substitute the word “football” for “drug,” then you know the results of a new study in

JAMA, which definitively proves that football is bad for one’s health. In the study of 111 brains of former NFL players donated to the researchers, 110 (that’s 99.1% of the sample) showed evidence of chronic traumatic encephalopathy (CTE). Researchers examined a total of 202 donated brains. Ninety-one brains came from non-NFL players including those who played in pre-high school; high school; college, semi-pro, and Canadian Football League. Of those brains 66 showed evidence of CTE (72.5%). The percent of players with CFL increases with the level of football play (which is a substitute for number of years in the sport and number of likely concussions).

Level of PlayPercent of Brains Showing CTE
Pre-High School0%
High School21%
College91%
Semi-Pro64%
CFL88%
NFL99%
*Maez, Daneshvar, Kiernan 2017

The severity of the brain’s CTE was correlated with the level of play as well. One hundred percent of high school player’s brains had mild CTE and 86% of professional players had severe CTE.

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

Charlie Gard, Baby Doe and the Wisdom of Bill Bartholome

The family of Charlie Gard

The Charlie Gard case in the UK has captured international attention regarding the best interest of an 11-month old child with terminal illness whose parents and medical providers in London can’t agree on the best course of treatment and care.

The apparently irreconcilable disagreements between the parents and his care providers have extended from weeks into months and, according to the English news source The Telegraph on Wednesday, July 19, the impasse may likely continue. Reportedly, Mr. Justice Francis, the High Court judge managing the case, confirmed that they are “due to hold further hearings later this month,” following the much-awaited American neurologist’s examination of Charlie that took place earlier this week.

Should Charlie’s parents be granted permission, allowing him to receive the experimental treatment they seek on his behalf, or is what they seek not in Charlie’s best interest due to the severity of his illness and the uncertainty surrounding the benefit of the experimental treatment?
These difficult and highly emotional cases are not without precedent. An historical perspective may be helpful in exploring the ethical dimensions of how best to proceed in situations like these.

What follows is a reflection by Myra Christopher on the Center for Practical Bioethics’ work in developing Healthcare Treatment Decision Making for Minors, including infants, that is now more than two decades old.

– – – – – – – – – – –

“Don’t forget about children” was Bill Bartholome’s response when I asked, shortly before his death in 1999, how we could honor him.

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

Medical tourism for controversial treatment options

By Dominic Wilkinson

 

Baby C’s parents had done their research. They had read widely about different options for C and had clear views about what they felt would be best for their child. They had asked a number of doctors in this country, but none were willing to provide the treatment. After contacting some specialists overseas, they had found one expert who agreed. If the family were able to pay for treatment, he was willing to provide that treatment option.

However, when C’s local doctors discovered that the parents planned to leave the country for treatment the doctors embarked on court proceedings and contacted the police.

One of the questions highlighted in the Charlie Gard case has been whether his parents should be free to travel overseas for desired experimental treatment. It has been claimed that the NHS and Great Ormond St are “keeping him captive”. Why shouldn’t C’s parents be free to travel to access a medical treatment option? When, if ever, should a state intervene to prevent medical tourism?

On the face of it, stopping patients or parents from undertaking medical tourism appears to violate two important freedoms – the freedom to travel and the freedom to make decisions about medical treatment. There might be reason for a country not to provide a particular treatment option – for example because it is unaffordable within a public healthcare system, or because doctors in that country do not approve of it, or lack experience or expertise in providing it. But why should patients or parents be prevented from accessing treatment overseas.

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

My Sister’s Keeper: An Assessment of Living Organ Donation among Minors

by Alex Fleming

The 2009 film My Sister’s Keeper, based on Jodi Picoult’s 2004 New York Times bestselling novel which bears the same name, is among other things, a controversial story about a young girl (Anna Fitzgerald) who sues her own parents in order to obtain legal rights to the use of her body. For as long as she can remember, Anna has unwillingly been providing blood and bone marrow to her older and critically ill sister, Kate. As the story unfolds, tension within the family arises as the 13 year-old Anna Fitzgerald becomes fully aware of her reason for existence, so to speak, which is to prevent the death of her older sister by providing a regular supply of blood and bone marrow, which she has done regularly for several years. Later on, as Kate’s condition worsens and her renal function begins to fail, the parents naturally turn to Anna to provide what could be a life-saving kidney transplant for her older sister. The climax of the story begins as Anna confidently and heroically refuses. The story raises a slew of bioethical issues which are beyond the scope of this essay; however, the story sheds light on a topic worthy of discussion: living organ donation among minors.

As the supply of organs suitable for transplantation decreases and the demand for them increases, the question of living organ donation among those yet of age has become a question of greater concern, primarily among those who point to the various ethical implications which such a procedure creates.

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

Case-Based Study Guide for Addressing Patient-Centered Ethical Issues in Health Care

The American Society for Bioethics and Humanities (ASBH) announces the publication of A Case-Based Study Guide for Addressing Patient-Centered Ethical Issues in Health Care.


Authored by the ASBH Clinical Ethics Consultation Affairs Committee, this 160-page study guide provides an unfolding approach to 12 cases—9 involving adult patients, 3 involving minors—on various topics in clinical ethics. The presentation of these complex cases mimics the way that they evolve incrementally in the clinical setting: Patient and family narratives are interwoven with skills-based, reflective study questions that encourage critical thinking on the part of ethics consultants, ethics committee members, students, and other healthcare professionals.


All healthcare professionals and students seeking to build their competencies, from the basic skills used to address common ethical issues to advanced consultative skills that can be used to address complex ethical concerns, will find this resource useful. 


Included are tips related to communication and decision making in medicine, including strategies for guiding fruitful patient interviews, elucidating patients’ or surrogates’ concerns or perspectives, and conducting family meetings. 

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

2nd International Conference on End-of-Life Law, Ethics, Policy, and Practice

Check out this remarkable collection of concurrent sessions coming up at the 2nd International Conference on End-of-Life Law, Ethics,
Policy, and Practice (ICEL) in Halifax.



The Ethics of POLST
Lloyd Steffen


The Perils of POLST
Jean Abbott


Advanced Directives and Advanced Care Planning
Peter Saul


“Rock, Paper, Scissors” – Ideologies of End of Life Care for Older People in Hospital
Laura Green


The Cultural Construction of End of Life Issues in Biomedicing: Anthropological Perspectives
Betty Wolder Levin


Caregiver Perspectives of Palliative and End of Life Care for Individuals at End-Stage Dementia in Newfoundland and Labrador: A Qualitative 
Phenomenological Perspective
Barbara Mason


End of Life Regulation and Recent Evolutions in France
Veronique Fournier


To Live and Let Die. Withholding and Withdrawing Life Sustaining Treatment in Argentina: From Therapeutic to Judicial Obstinacy
Maria Ciruzzi


When and How I Shan’t Live: Refusing Life-Prolonging Medical Treatment and Article 8 ECHR
Isra Black


Divorcing Mercy Killing from Euthanasia
Bryanna Moore


The Shift Away from Suicide Talk: Incorporating Voices of Experience
Phoebe Friesen


Elderly Who are Ready to Give Up on Life and the Right to Autonomy
Michelle Habets


Dutch GP’s Views on Good Dying and Euthanasia
Katja ten Cate


Medical Aid in Dying in New York State: Physician Attitudes and Impact of Framing Bias
Brendan Parent


Physicians’ Perceptions of Aid in Dying in Vermont
Ari Kirshenbaum


A New American Threat to Open Discussion of End-of-Life Issues
Robert Rivas


Demedicalised Assistance in Suicide
Martijn Hagens


The Human Rights Implications of the Blanket Ban on Assisted Suicide in England and Wales
Stevie Martin


A Year in Review: The Who, When, Why and How of Requests for Medical Aid in Dying in Quebec
Lori Seller and Veronique Fraser


Medical Aid in Dying: An Update from Québec
Michelle Giroux


Regulating MAiD: The Medical Regulatory Perspective
Andréa Foti


Patients with Parkinson’s Disease, Caregivers’, and Healthcare Providers’ Perspectives on Advance Care Planning on End-of-Life Care
Kim Jameson


‘You’re Going to Die.

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

How Different are Female, Male and Intersex Genital Cutting?

By Brian D. Earp  (@briandavidearp), with Rebecca Steinfeld, Goldsmiths, University of London 

Three members of the Dawoodi Bohra sect of Islam were recently indicted on charges of “female genital mutilation” (FGM) in the US state of Michigan. In Norway, meanwhile, one of the major political parties has backed a measure to ban childhood male circumcision.

Fearing that objections to female forms of genital cutting will be applied to male forms, some commentators have rushed to draw a “clear distinction” between them. Others, however, have highlighted the similarities.

In fact, childhood genital cutting is usually divided not just into two, but three separate categories: “FGM” for females; “circumcision” for males; and “genital normalisation” surgery for intersex children – those born with ambiguous genitals or mixed sex characteristics.

In Western countries, popular attitudes towards these procedures differ sharply depending on the child’s sex. In females, any medically unnecessary genital cutting, no matter how minor or sterilised, is seen as an intolerable violation of her bodily integrity and human rights. Most Westerners believe that such cutting must be legally prohibited.

In intersex children, while it is still common for doctors to surgically modify their genitals without a strict medical justification, there is growing opposition to non-essential “cosmetic” surgeries, designed to mould ambiguous genitalia into a “binary” male or female appearance.

Belgian model Hanne Gaby Odiele, for example, has spoken openly about the negative impact of the “irreversible, unconsented and unnecessary” intersex surgeries she was subjected to growing up.

In male children, by contrast, the dominant view is that boys are not significantly harmed by being circumcised, despite the loss of sensitive tissue.

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

2nd International Conference on End-of-Life Law, Ethics, Policy, and Practice (Halifax, Nova Scotia)

Join me this September in Halifax, Nova Scotia for the 2nd International Conference on End-of-Life Law, Ethics, Policy, and Practice.


Here are some highlights from the schedule:


Wednesday, September 13, 2017


The Story of Law Reform in Canada
Joe Arvay, Jim Cowan, Mona Gupta


Thursday, September 14, 2017


Empirical Studies: What do we know about end of life decisions making around the world?
Luc Deliens, Linda Ganzini, Bregje Onwuteaka-Philipsen, Lindy Wilmott


Palliative Care and its Relationship with Medical Aid in Dying
Kenneth Chambaere, James Downar, Eric Wasylenko


Stopping/Not Starting Potentially Life-Sustaining Treatment:
The Issue of Unilateral Decision Making 
Jennifer Gibson, Hilary Young


Palliative Sedation
Jocelyn Downie, Agnes van der Heide


Friday, September 15, 2017


Legal Status of Assisted Dying
Joan M. Gilmour, Maria M. Gomez, Emily Jackson, Ben White


Pressure Points for Eligibility for Medical Assistance in Dying (mature minors, mental illness as sole underlying condition, advance requests)
Christine Chambers, Justine Dembo, Jocelyn Downie, Jennifer Gibson, Joan M. Gilmour, Ken Rockwood

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.