Tag: intellectual disability

Bioethics Blogs

CRISPR and Identity

Dr. Joel Reynolds, a postdoctoral fellow at The Hastings Center recently wrote a very poignant essay in Time magazine arguing that our increasing ability to edit our own genetic code risks eventually eliminating the very genetic code that results in people like his younger brother Jason, who was born with muscle-eye-brain disease, resulting in muscular dystrophy, hydrocephalus, cerebral palsy, severe nearsightedness and intellectual disability. In… // Read More »

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

Gene Editing Might Mean My Brother Would’ve Never Existed

August 10, 2017

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Responses to this feat followed well-trodden trails. Hype over “designer babies.” Hope over new tools to cure and curb disease. Some spin, some substance and a good dose of science-speak. But for me, this breakthrough is not just about science or medicine or the future of humankind. It’s about faith and family, love and loss. Most of all, it’s about the life and memory of my brother.

Jason was born with muscle-eye-brain disease. In his case, this included muscular dystrophy, cerebral palsy, severe nearsightedness, hydrocephalus and intellectual disability. He lived past his first year thanks to marvels of modern medicine. A shunt surgery to drain excess cerebrospinal fluid building up around his brain took six attempts, but the seventh succeeded. Aside from those surgeries’ complications and intermittent illnesses due to a less-than-robust immune system, Jason was healthy. Healthy and happy — very happy. His smile could light up a room. Yet, that didn’t stop people from thinking that his disability made him worse off. My family and those in our religious community prayed for Jason. Strangers regularly came up to test their fervor. Prayer “circles” frequently had his name on their lists. We wanted him to be healed. But I now wonder: What, precisely, were we praying for?

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Image via TIME The author (left), with his brother Jason Courtesy of Joel Reynolds 

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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

"American Horror Story" in Real Life: Understanding Racialized Views of Mental Illness and Stigma

By Sunidhi Ramesh
Racial and ethnic discrimination has taken various forms in the
United States since its formation as a nation. The sign in the image
reads: “Deport all Iranians. Get the hell out of my country.”
Image courtesy of Wikipedia.
From 245 years of slavery to indirect racism in police sanctioning and force, minority belittlement has remained rampant in American society (1). There is no doubt that this history has left minorities in the United States with a differential understanding of what it means to be American and, more importantly, what it means to be an individual in a larger humankind.

Generally, our day-to-day experiences shape the values, beliefs, and attitudes that allow us to navigate the real world (2). And so, with regards to minorities, consistent exposure to these subjective experiences (of belittlement and discrimination, for example) can begin to shape subjective perceptions that, in turn, can mold larger perspectives and viewpoints.

Last spring, I conducted a project for a class to address the reception (3) of white and non-white, or persons of color (POC), students to part of an episode from American Horror Story: Freak Show. The video I asked them to watch portrays a mentally incapacitated woman, Pepper, who is wrongfully framed for the murder of her sister’s child. The character’s blatant scapegoating is shocking not only for the lack of humanity it portrays but also for the reality of being a human being in society while not being viewed as human.
Although the episode remains to be somewhat of an exaggeration, the opinions of the interview respondents in my project ultimately suggested that there exists a racial basis of perceiving the mental disabilities of Pepper—a racial basis that may indeed be deeply rooted in the racial history of the United States.

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 — September 2016, part II by Aaron Seaman

And, now, part two of September’s journal posting! (Part one is here.)

Medical Anthropology Quarterly

“I Hope I Get Movie-star Teeth”: Doing the Exceptional Normal in Orthodontic Practice for Young People

Anette Wickström

Orthodontics offer young people the chance to improve their bite and adjust their appearances. The most common reasons for orthodontic treatment concern general dentists’, parents’ or children’s dissatisfaction with the esthetics of the bite. My aim is to analyze how esthetic norms are used during three activities preceding possible treatment with fixed appliances. The evaluation indexes signal definitiveness and are the essential grounds for decision-making. In parallel, practitioners and patients refer to self-perceived satisfaction with appearances. Visualizations of divergences and the improved future bite become part of an interactive process that upholds what I conceptualize as “the exceptional normal.” Insights into this process contribute to a better understanding of how medical practices intended to measure and safeguard children’s and young people’s health at the same time mobilize patients to look and feel better. The article is based on an ethnographic study at two orthodontic clinics.

Huichol Migrant Laborers and Pesticides: Structural Violence and Cultural Confounders (open access)

Jennie Gamlin

Every year, around two thousand Huichol families migrate from their homelands in the highlands of northwestern Mexico to the coastal region of Nayarit State, where they are employed on small plantations to pick and thread tobacco leaves. During their four-month stay, they live, work, eat, and sleep in the open air next to the tobacco fields, exposing themselves to an unknown cocktail of pesticides all day, every day.

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

Relying on Psychological Assessments do not Right Death Penalty Wrongs for the Intellectually Disabled

Although the death penalty is on the decline in the United States, the case of James Rhodes highlights the ethical quagmire facing forensic psychiatrists and psychologists whose evaluations contribute whether persons with intellectual disabilities convicted of murder will live or die.

In addition to the increasingly familiar racial biases and legal flaws in death penalty convictions and use of lethal injection, according to Celia B. Fisher, Ph.D. Director of Fordham University’s Centerfor Ethics Education, little attention has been paid to the lack of professional consensus surrounding the validity and reliability of IQ tests in general and for racial minorities in particular, disagreement over the use of absolute cut-off scores to determine intellectual disability, and the inherent fallibility of tests to determine the probability of future violence.

“Professional evaluations are not a panacea for inconsistent, uninformed and often racially biased jury decisions,” notes Fisher, “rather than providing a fair and neutral assessment of mental ability forensic assessments are contributing to inconsistencies that lethally violate the human rights of convicted criminals in capital cases.”

For more information on the ethics of psychologists’ involvement in death penalty evaluations – particularly for defendants with mental disabilities Dr. Fisher’s 2013 article in Ethics & Behavior entitled “Human Rights and Psychologists’ Involvement in Assessments Related to Death Penalty Cases.”

Celia B. Fisher, Ph.D. is the Marie Ward Doty University Chair, Professor of Psychology, and Director of Fordham University’s Center for Ethics Education. She chaired the 2002 revision of the American Psychological Association’s Ethics Code and is the author of Decoding the Ethics Code: A Practical Guide for Psychologists, now in it’s fourth edition, from Sage Publications.

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

Personalized Genomics Dramatically Aids Intellectual Disability Diagnosis

May 27, 2016

(Genetic Engineering & Biotechnology News) – New findings from clinical studies lead by scientists at British Columbia Children’s Hospital, an agency of the Provincial Health Services Authority, and the University of British Columbia, show the life-altering benefits of genome-wide sequencing for children with certain kinds of intellectual disabilities. The results from this study were published recently in the New England Journal of Medicine through an article entitled “Exome Sequencing and the Management of Neurometabolic Disorders.”

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 Journal of Genetic Counseling Is Now Available

May 26, 2016

Journal of Genetic Counseling (vol. 25, no. 3, 2016) is available online by subscription only.

Articles include:

  • “Reproductive Decision-Making in MMR Mutation Carriers after Results Disclosure: Impact of Psychological Status in Childbearing Options” by Jacqueline Duffour, et al.
  • “Survey of the Definition of Fetal Viability and the Availability, Indications, and Decision Making Processes for Post-Viability Termination of Pregnancy for Fetal Abnormalities and Health Conditions in Canada” by Danna Hull, Gregory Davies, and Christine M. Armour
  • “Sex Education and Intellectual Disability: Practices and Insight from Pediatric Genetic Counselors” by Carly Murphy, 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

Should we prevent Zika microcephaly using birth control?

Dominic Wilkinson, University of Oxford, @Neonatalethics

The World Health Organisation is to hold an emergency meeting after considerable concern about the zika virus in South America. The epidemic has been of considerable concern particularly because it has been linked to microcephaly (unusually small heads) in newborn babies that can lead to potentially devastating brain problems.

There is fear that this virus (if it is the cause) could spread throughout the Americas, including North America. There is no vaccine or treatment for the virus, and no known treatment for children who suffer brain damage in the womb. Officials in Columbia, Ecuador, El Salavador and Jamaica have recommended that women avoid or defer becoming pregnant to prevent their babies being affected. But is it ethical to use birth control to control Zika microcephaly?

Surging cases

In November, Brazil declared a state of emergency following a sudden and unprecedented surge in the number of newborns born with microcephaly. There are reports of almost 4,000 babies born in Brazil in recent months, compared with a normal rate of about 150 cases a year.

Microcephaly can be caused by a range of different factors and illnesses including genetic abnormalities or after exposure to drugs or radiation. In some cases later intelligence may be normal. However, there is a relatively high rate of intellectual disability, epilepsy and other developmental problems in children born with microcephaly. This is because the small size of the head often indicates a very serious problem affecting brain development in the womb.

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.