Tag: informed consent

Bioethics Blogs

“She Can’t Help The Choices She Makes”

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STUDENT VOICES | CHYNN PRIZE FIRST-PLACE WINNER

By Madeleine Cardona

I will never forget the day my mother got diagnosed. I could swear that just yesterday I was thirteen years old waiting anxiously to be called in from the waiting room of some fancy New York State doctor’s office. I was young, but I had some idea of what was going on. I knew my parents and I were there because they were going through a divorce and fighting for custody of me. What I did not know was that we were about to endure a court-ordered psychiatric evaluation and that the results were going to change my life forever.

“Madeleine, your mom is very sick,” the psychiatrist attempted to explain to me. I did not understand. I did not know a sick person could look perfectly healthy. “It’s not a physical sickness, it’s in her head. She has a mental disorder called Paranoid Schizophrenia.” She went on using big words to explain how my mother’s brain “wasn’t like other people’s brains.” I sat there listening closely, hanging on every word the woman was saying to me. “She can’t help the choices that she makes, it’s not her fault that she is the way that she is. She needs help.” Every day since that day in the doctor’s office, that remark replays in my head over and over. “She can’t help the choices she makes.”

That is what gave me the most trouble. I sat around for years and years watching the choices that my mother was making, unable to intervene.

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

Webinar Follow-up: Common Rule Exemptions and Types of Review

In June 2017, PRIM&R hosted the webinar series Focus on the Revised Common Rule. Comprising four sessions on the topics of informed consent, exemptions and types of review, biospecimens and identifiable private information, and implications for social, behavioral, and educational research (SBER), these webinars provided a close look at the most significant areas of change […]

The post Webinar Follow-up: Common Rule Exemptions and Types of Review appeared first on Ampersand.

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

Lessons from the West African Ebola epidemic

Conventional wisdom—and an article in the Journal of Medical Ethics reviewed on this blog two years ago—advise that health research should not be conducted during times of crisis. Yes, such conditions compromise the controlled environments that studies typically require to produce reliable results, but they can also threaten the ethical integrity of research. Without institutional mechanisms to hold them accountable, investigators may cut corners, violate standards of privacy and informed consent, and even endanger participants. Disruption in the normal function of medical services can also apply pressure on individuals unable to access care by traditional means to seek it out by participating in risky research. And even if one assumes that researchers display honesty beyond reproach, it is still unreasonable to expect that they would be able to keep their cool in the midst of widespread panic and social collapse. But there is a fly in the ointment, at least when it comes to crises caused by epidemics. Public health organizations are first-responders at these moments, but they would be dead in the water without relevant data collected under real-world conditions to guide their actions. In this situation, the precautionary principle alone is not enough to stop a study altogether. In fact, it could be argued that an absolute prohibition against biomedical research in such situations may itself be unethical. The question then becomes, not whether, but how to guarantee ethical research during outbreaks?

The Ethics Review Board (ERB) of Médecins Sans Frontières (MSF) had to contend with this question during the 2014 Ebola epidemic. They recently chronicled their experience in the April issue of Public Health Ethics.

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

Ethics & Society Newsfeed: August 18, 2017

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Politics

Neil Gorsuch Speech at Trump Hotel Raises Ethical Questions
“Justice Neil M. Gorsuch, President Trump’s Supreme Court appointee, is scheduled to address a conservative group at the Trump International Hotel in Washington next month, less than two weeks before the court is set to hear arguments on Mr. Trump’s travel ban.”

Trump’s Washington DC hotel turns $2m profit amid ethics concerns
“Donald Trump’s company is said to have taken home nearly $2m in profits this year at its extravagant hotel in Washington, DC – amid ethics concerns stemming from the President’s refusal to fully divest from his businesses while he is in office.”

3 representatives want to officially censure Trump after Charlottesville
“In response to Donald Trump’s controversial remarks about the violence in Charlottesville, Virginia, three Democrats want to censure the president.”

Does Trump’s Slippery Slope Argument About Confederate Statues Have Merit?
“NPR’s Robert Siegal talks with Ilya Somin, a professor of George Mason University, about President Trump’s warning that pulling down Confederate statues may lead to a slippery slope in which monuments to the Founding Fathers are torn down.”

Bioethics/Medical Ethics and Research Ethics

Vaccination: Costly clash between autonomy, public health
Bioethical principles in conflict with medical exemptions to vaccinations

CRISPR and the Ethics of Human Embryo Research
“Although scientists in China and the United Kingdom have already used gene editing on human embryos, the announcement that the research is now being done in the United States makes a U.S. policy response all the more urgent.”

Exclusive: Inside The Lab Where Scientists Are Editing DNA In Human Embryos
“[Critics] fear editing DNA in human embryos is unsafe, unnecessary and could open the door to “designer babies” and possibly someday to genetically enhanced people who are considered superior by society.”

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

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 News

Meyerhoff Professor Grapples with Bioethical Issues

crossposted from Rising to the Challenge: The Campaign for Johns Hopkins

 


 

 

How should resources be allocated between HIV treatment for those already infected and finding ways to prevent HIV to avert more illness and death in the long run?

 

This is the sort of thorny question Jeremy Sugarman, MD, MPH, MA – deputy director for medicine of the Johns Hopkins Berman Institute of Bioethics and the Harvey “Bud” M. Meyerhoff Professor of Bioethics and Medicine – tackles in his research.

 

And he credits the Meyerhoff Professorship for not only bringing him to Hopkins, but giving him the freedom to take chances in his research and help those who are most vulnerable.

 

“The professorship made it possible to explore things that were a little bit more risky in bioethics. Classically, we need to raise money to do particular projects, and those particular projects are very circumscribed. We can’t always take on a venture, something new, something unusual,” Sugarman explains.

 

“The professorship gave me the opportunity to work with colleagues in the School of Medicine, in the Bloomberg School of Public Health, and across the university, on questions of bioethics that otherwise may not be addressed,” he says. Some of these earlier projects involved international HIV prevention trials in border regions of China and Thailand and preventing HIV transmission from mother to child in Uganda.

 

“Previously, I wouldn’t have time to just leave, go on a trip, work with those people, and grapple with some of the ethical issues that people around the globe were facing.

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

Should Medical Offices Be Run Like Law Firms?

By Shailin Thomas Earlier this summer, the Supreme Court of Pennsylvania ruled that a physician cannot delegate obtaining informed consent from a patient to a member of her staff.  In Shinal v. Toms, a neurosurgeon perforated a patient’s cranial artery while … Continue reading

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: Three Issues That Did Not Make Social Media

by Ann Mongoven, Ph.D., MPH

All hearts go out to the Gard family in this time of grief for their son, Charlie.

The legal wrangling over Charlie’s care became a political football–unfortunately, about many things having little to do with Charlie.

Despite the involvement of Pope Francis, this was not a case about abortion rights or the sanctity of human life. Catholic tradition warns both that quality-of-life arguments can dehumanize the disabled, and that unduly burdensome medical care can become assaultive. There is no “Catholic” view of the case, and Catholic moral theologians disagree about it.

Despite the involvement of Donald Trump, this was not a case about the relative merits of the U.K. National Health Service (NHS) versus other health systems. It was not a case of utilitarian ethics pitted against duty-based ethics or love. The NHS provided extremely expensive intensive care for Charlie for most of his life, and British courts governed cases related to his care solely by a “best interest of the child” standard– amidst heated disagreement between Charlie’s parents and doctors about his interests. The European Court of Human Rights backed the British court decision.

The case did address questions about who should decide when parents and doctors disagree about a child’s medical interest. But contrary to some portrayals in the American press, it neither changed conventional parameters for addressing those questions, nor exposed major differences in legal reasoning used to address them in the U.K. and the U.S.  Both countries appeal to “best interest” standards for resolution, and both reject an absolutist interpretation of parental rights.

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

Webinar Follow-up: Common Rule Informed Consent, Part II

This is Part II of a two-part entry.
In June 2017, PRIM&R hosted the webinar series Focus on the Revised Common Rule. Comprising four sessions on the topics of informed consent, exemptions and types of review, biospecimens and identifiable private information, and implications for social, behavioral, and educational research (SBER), these webinars provided a close look at the most significant areas of change described in the revised Common Rule.

The post Webinar Follow-up: Common Rule Informed Consent, Part II appeared first on Ampersand.

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.