Tag: consultation

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

Ethics Committees Should Have Standards in Preparing New Members

Guest Post: Danish Zaidi and Jennifer Kesselheim
Paper: Assessment of orientation practices for ethics consultation at Harvard Medical School-affiliated hospitals

Ethics advisory committees (EACs), or clinical ethics committees, fulfill an important role in hospitals, providing ethics consultation, contributing to hospital-wide policies, and educating staff on ethical dimensions of medical practice. Our study built upon a central question: what qualifies one to serve on these sorts of committees? It’s a question with added relevance to us as authors: Danish Zaidi was part of the inaugural class of the Harvard Medical School Master of Bioethics program and Jennifer Kesselheim is an EAC co-chair and the founding director of the Harvard Medical School Master of Medical Sciences (MMSc) in Medical Education program. We studied how EACs recruit and educate members of their committees. In particular, what orientation practices were use in educating new members of EACs and how did members perceive confidence were member in fulfilling their duties on the other end of their “orientation”?

In recent years, the American Society for Bioethics & Humanities (ASBH) has made efforts to improve and standardize practices in ethics consultation across medical institutions. The ASBH has published two foundational books regarding ethics consultation and recently their Board of Directors approved the development of a healthcare ethics consultation (HCEC) certification program. Such efforts allude to a desire for standards in ethics consultation. As such, we turned to the ASBH Core Competencies in Healthcare Ethics Consultation to identify areas that we felt committee members should have familiarity with, using these competencies as metrics to develop our survey instrument.

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

Human genome editing: We should all have a say

Françoise Baylis stresses that decisions about the modification of the human germline should not be made without broad societal consultation.

__________________________________________

Shoukhrat Mitalipov, a reproductive biologist at Oregon Health and Science University, is nothing if not a pioneer. In 2007, his team published proof-of-principle research in primates showing it was possible to derive stem cells from cloned primate embryos. In 2013, his team was the first to create human embryonic stem cells by cloning. Now, in 2017, his team has reported safely and effectively modifying human embryos with the MYBPC3 mutation (which causes myocardial disease) using the gene editing technique CRISPR.

Mitalipov’s team is not the first to genetically modify human embryos. This was first accomplished in 2015 by a group of Chinese scientists led by Junjiu Huang. Mitalipov’s team, however, may be the first to demonstrate basic safety and efficacy using the CRISPR technique.

This has serious implications for the ethics debate on human germline modification which involves inserting, deleting or replacing the DNA of human sperm, eggs or embryos to change the genes of future children.

Those who support human embryo research will argue that Mitalipov’s research to alter human embryos is ethically acceptable because the embryos were not allowed to develop beyond 14 days (the widely accepted international limit on human embryo research) and because the modified embryos were not used to initiate a pregnancy. They will also point to the future potential benefit of correcting defective genes that cause inherited disease.

This research is ethically controversial, however, because it is a clear step on the path to making heritable modifications – genetic changes that can be passed down through subsequent generations.

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

Human genome editing: We should all have a say

Controversial gene editing should not proceed without citizen input and societal consensus. (Shutterstock)

Shoukhrat Mitalipov, a reproductive biologist at Oregon Health and Science University, is nothing if not a pioneer. In 2007, his team published proof-of-principle research in primates showing it was possible to derive stem cells from cloned primate embryos. In 2013, his team was the first to create human embryonic stem cells by cloning. Now, in 2017, his team is reported to have safely and effectively modified human embryos using the gene editing technique CRISPR.

Mitalipov’s team is not the first to genetically modify human embryos. This was first accomplished in 2015 by a group of Chinese scientists led by Junjiu Huang. Mitalipov’s team, however, may be the first to demonstrate basic safety and efficacy using the CRISPR technique.

This has serious implications for the ethics debate on human germline modification which involves inserting, deleting or replacing the DNA of human sperm, eggs or embryos to change the genes of future children.

Ethically controversial

Those who support human embryo research will argue that Mitalipov’s research to alter human embryos is ethically acceptable because the embryos were not allowed to develop beyond 14 days (the widely accepted international limit on human embryo research) and because the modified embryos were not used to initiate a pregnancy. They will also point to the future potential benefit of correcting defective genes that cause inherited disease.

This research is ethically controversial, however, because it is a clear step on the path to making heritable modifications – genetic changes that can be passed down through subsequent generations.

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

End-of-Life Healthcare Sessions at ASBH 2017

The 2017 ASBH
conference
 in October 2017 includes over 400 workshops, panels, and
papers in bioethics and the health humanities.  Here are ones that pertain
to end-of-life issues.


THURSDAY, OCTOBER 19


THU 1:30 pm:  End-of-Life Care and Decision-Making in the ICU – Limited
English Proficiency as a Predictor of Disparities (Amelia Barwise)


Importance: Navigating choices in predominantly English-speaking care settings
can present practical and ethical challenges for patients with limited English
proficiency (LEP). Decision-making in the ICU is especially difficult and may
be associated with disparities in health care utilization and outcomes in critical
care. 


Objective: To determine if code status, advance directives, decisions to limit
life support, and end-of-life decision-making were different for ICU patients
with LEP compared to English-proficient patients. 


Methods: Retrospective cohort study of adult ICU patients from
5/31/2011-6/1/2014. 779 (2.8%) of our cohort of 27,523 had LEP. 


Results: When adjusted for severity of illness, age, sex, education, and
insurance status, patients with LEP were less likely to change their code
status from full code to do not resuscitate (DNR) during ICU admission (OR,
0.62; 95% CI, 0.46-0.82; p


Conclusion: Patients with LEP had significant differences and disparities in
end-of-life decision-making. Interventions to facilitate informed
decision-making for those with LEP is a crucial component of care for this
group.


THU 1:30 pm:  “But She’ll Die if You Don’t!”: Understanding and
Communicating Risks at the End of Life (Janet Malek)


Clinicians sometimes decline to offer interventions even if their refusal will
result in an earlier death for their patients. For example, a nephrologist may
decide against initiating hemodialysis despite a patient’s rising creatinine
levels if death is expected within weeks even with dialysis.

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

Authorship and Pets

The International Committee of Medical Journal Editors is an
influential group that, as expected, takes publication and authorship very
seriously.  They have issued the most
generally accepted definition of the criteria for authorship of scientific
publications. They list these criteria very clearly and unambiguously on their website.
These criteria are:

“The ICMJE
recommends that authorship be based on the following 4 criteria:

  •            Substantial
    contributions to the conception or design of the work; or the acquisition,
    analysis, or interpretation of data for the work; AND

  •          Drafting the
    work or revising it critically for important intellectual content; AND
  •           Final
    approval of the version to be published; AND
  •          Agreement to
    be accountable for all aspects of the work in ensuring that questions related
    to the accuracy or integrity of any part of the work are appropriately
    investigated and resolved. “
  • They go on to say “All those designated as authors
    should meet all four criteria for authorship, and all who meet the four
    criteria should be identified as authors.” There does not seem to leave much
    doubt as to their meaning. The practise of guest authorship, including authors
    with non-substantive contributions by virtue of their position was once common
    but is now considered inappropriate. However, no simple set of guidelines can
    address all possible circumstances. Which raises the point I am addressing in
    this blog: What about pets?

    An important paper
    on atomic behaviour published in Physical Reviews by Jack Hetherington and
    F.D.C.

    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

    Authorship and Pets

    The International Committee of Medical Journal Editors is an
    influential group that, as expected, takes publication and authorship very
    seriously.  They have issued the most
    generally accepted definition of the criteria for authorship of scientific
    publications. They list these criteria very clearly and unambiguously on their website.
    These criteria are:

    “The ICMJE
    recommends that authorship be based on the following 4 criteria:

      Substantial
    contributions to the conception or design of the work; or the acquisition,
    analysis, or interpretation of data for the work; AND

      Drafting the
    work or revising it critically for important intellectual content; AN

      Final
    approval of the version to be published; AND

      Agreement to
    be accountable for all aspects of the work in ensuring that questions related
    to the accuracy or integrity of any part of the work are appropriately investigated and resolved. “

    They go on to say “All those designated as authors
    should meet all four criteria for authorship, and all who meet the four
    criteria should be identified as authors.” There does not seem to leave much
    doubt as to their meaning. The practise of guest authorship, including authors
    with non-substantive contributions by virtue of their position was once common
    but is now considered inappropriate. However, no simple set of guidelines can
    address all possible circumstances. Which raises the point I am addressing in
    this blog: What about pets?

    An important paper
    on atomic behaviour published in Physical Reviews by Jack Hetherington and
    F.D.C. Willard is the object of this question.

    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

    Grounding ethics from below: CRISPR-cas9 and genetic modification

    By Anjan Chatterjee

    The University of Pennsylvania

    Anjan Chatterjee is the Frank A. and Gwladys H. Elliott Professor and Chair of Neurology at Pennsylvania Hospital. He is a member of the Center for Cognitive Neuroscience, and the Center for Neuroscience and Society at the University of Pennsylvania. He received his BA in Philosophy from Haverford College, MD from the University of Pennsylvania and completed his neurology residency at the University of Chicago. His clinical practice focuses on patients with cognitive disorders. His research addresses questions about spatial cognition and language, attention, neuroethics, and neuroaesthetics. He wrote The Aesthetic Brain: How we evolved to desire beauty and enjoy art and co-edited: Neuroethics in Practice: Mind, medicine, and society, and The Roots of Cognitive Neuroscience: behavioral neurology and neuropsychology. He is or has been on the editorial boards of: American Journal of Bioethics: Neuroscience, Behavioural Neurology, Cognitive and Behavioral Neurology, Neuropsychology, Journal of Cognitive Neuroscience, Journal of Alzheimer’s Disease, Journal of the International Neuropsychological Society, European Neurology, Empirical Studies of the Arts, The Open Ethics Journal and Policy Studies in Ethics, Law and Technology. He was awarded the Norman Geschwind Prize in Behavioral and Cognitive Neurology by the American Academy of Neurology and the Rudolph Arnheim Prize for contribution to Psychology and the Arts by the American Psychological Association. He is a founding member of the Board of Governors of the Neuroethics Society, the past President of the International Association of Empirical Aesthetics, and the past President of the Behavioral and Cognitive Neurology Society. He serves on the Boards of Haverford College, the Associated Services for the Blind and Visually Impaired and The College of Physicians of Philadelphia. 

    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

    Certification for Health Care Ethics Consultants: An Update

    At its April 2017 meeting, the American Society for Bioethics and Humanities (ASBH) Board of Directors considered the final reports of the Healthcare Ethics Consultation (HCEC) Certification Task Force that was appointed in July 2016.


    On the basis of the role delineation study and needs assessment conducted by the task force, the board approved in concept the development of a voluntary, professional certification program to validate the professional knowledge and professional legitimacy of individual healthcare ethics consultants.


    The next steps are to refine the competencies, structure, charges, and budget for the group of volunteer leaders that will lead this effort. The board anticipates opening a call for applications after its July meeting and making appointments in September.

    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.