Tag: disability

Bioethics Blogs

Revising the Ethical Framework for Deep Brain Stimulation for Treatment-Resistant Depression

By Somnath Das

Somnath Das recently graduated from Emory University where he majored in Neuroscience and Chemistry. He will be attending medical school at Thomas Jefferson University starting in the Fall of 2017. Studying Neuroethics has allowed him to combine his love for neuroscience, his interest in medicine, and his wish to help others into a multidisciplinary, rewarding practice of scholarship which to this day enriches how he views both developing neurotechnologies and the world around him. 

Despite the prevalence of therapeutics for treating depression, approximately 20% of patients fail to respond to multiple treatments such as antidepressants, cognitive-behavioral therapy, and electroconvulsive therapy (Fava, 2003). Zeroing on an effective treatment of “Treatment-Resistant Depression” (TRD) has been the focus of physicians and scientists. Dr. Helen Mayberg’s groundbreaking paper on Deep Brain Stimulation (DBS) demonstrates that electrical modulation an area of the brain called subgenual cingulate resulted in a “sustained remission of depression in four of six (TRD) patients” These patients experienced feelings that were described as “lifting a void,” or “a sudden calmness.” (Mayberg et al. 2005). The importance of this treatment lies in the fact participants who received DBS for TRD (DBS-TRD) often have no other treatment avenues, and thus Mayberg’s findings paved the way for DBS to have great treatment potential for severely disabling depression. 

Image courtesy of Wikimedia Commons
Because DBS involves the implantation of electrodes into the brain, Dr. Mayberg and other DBS researchers faced intense scrutiny following publication of their initial findings regarding the ethics of using what to some seems like a dramatic intervention for TRD.

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

Transferring Embryos with Genetic Anomalies

Jackie Leach Scully argues that respect for equality and diversity, and not just respect for the parental autonomy and the welfare of the future child, should inform policies governing the use of preimplantation genetic diagnosis.

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The Ethics Committee of the American Society for Reproductive Medicine recently published an Opinion on “Transferring embryos with genetic anomalies detected in preimplantation testing.” The Opinion aims to help providers deal with the rare but ethically difficult situation when prospective parents want to transfer embryos with a known genetic anomaly that is linked to a serious health-affecting disorder.

Preimplantation genetic diagnosis (PGD) is typically used by couples to avoid transferring a genetic anomaly to their children. Using PGD to ensure the transfer of a genetic anomaly, rather than avoid it, seems deeply counter-intuitive. Yet, there are several scenarios where this might happen. For example, this might be a reasonable option when the only transferable embryos carry the genetic anomaly, or when the embryos carry a different, but potentially just as serious, genetic variation.

The most problematic cases, however, occur when prospective parents express an actual preference for children with ‘their’ genetic condition – an anomalous condition that others perceive in negative terms. It’s an uncommon situation, but despite its rarity steps have been taken to block attempts by prospective parents to ‘choose disability’, such as the UK’s legislation on reproductive medicine. The legislation prohibits the use of an embryo (or gamete, in the case of egg and sperm donation) that has a genetic anomaly “involving a significant risk” of “a serious physical or mental disability, serious illness, or a serious medical condition” unless there are no other unaffected embryos or gametes that could be used instead.

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

CFP: Pain and its Paradoxes

BMJ Medical Humanities will host a special issue on PAIN in June 2018. Be part of it.


Title: Pain and its Paradoxes
Abstract Deadline: August 1, 2017
Final Submission Deadline: October 1, 2017 (publication date June 2018)


Pain is almost certainly the most common illness experience on the planet.  Yet, it is frequently treated poorly, and those who experience pain often endure skepticism, doubt, and stigma for their condition.  In most places around the world, pain closely tracks social power structures, which means that marginalized groups are both more likely to experience pain, and are more likely to have it regarded dubiously and treated inadequately.


Moreover, while pain is a near-universal part of the human condition, it remains difficult to define and conceptualize.  As Emily Dickinson famously noted, pain has an element of blank.  And while pain and suffering are often experienced together, they remain distinct phenomena: some people in pain do not suffer, and some people who suffer state that they are not in pain.  Pain is an essential pathway to redemption for many, and for others it exists only as a devastating, hollowing experience that defies meaning.  In short, the paradoxes of pain are multiple, varied, and slippery.  While pain has not escaped scholarly attention in the medical and health humanities over the last decade, current and inequitable burdens of global pain alone justify sustained focus and analysis.  


Accordingly, the Special Issue of Medical Humanities on “Pain and its Paradoxes” aims to integrate critical and rigorous scholarship (peer reviewed) addressing the lived experiences of pain, past, present, and future.

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

The Neuroethics Blog Series on Black Mirror: Be Right Back

By Somnath Das
Somnath Das recently graduated from Emory University where he majored in Neuroscience and Chemistry. He will be attending medical school at Thomas Jefferson University starting in the Fall of 2017. The son of two Indian immigrants, he developed an interest in healthcare after observing how his extended family sought help from India’s healthcare system to seek relief from chronic illnesses. Somnath’s interest in medicine currently focuses on understanding the social construction of health and healthcare delivery. Studying Neuroethics has allowed him to combine his love for neuroscience, his interest in medicine, and his wish to help others into a multidisciplinary, rewarding practice of scholarship which to this day enriches how he views both developing neurotechnologies and the world around him. 
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Humans in the 21st century have an intimate relationship with technology. Much of our lives are spent being informed and entertained by screens. Technological advancements in science and medicine have helped and healed in ways we previously couldn’t dream of. But what unanticipated consequences may be lurking behind our rapid expansion into new technological territory? This question is continually being explored in the British sci-fi TV series Black Mirror, which provides a glimpse into the not-so-distant future and warns us to be mindful of how we treat our technology and how it can affect us in return. This piece is part of a series of posts that will discuss ethical issues surrounding neuro-technologies featured in the show and will compare how similar technologies are impacting us in the real world. 

*SPOILER ALERT* – The following contains plot spoilers for the Netflix television series Black Mirror

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 2017, part two by Aaron Seaman

The first part of the In the Journals post for June 2017 can be found here. And now, for part two…

 

Medical Humanities

SPECIAL ISSUE: Communicating Mental Health

Introduction: historical contexts to communicating mental health

Rebecca Wynter and Leonard Smith

Contemporary discussions around language, stigma and care in mental health, the messages these elements transmit, and the means through which they have been conveyed, have a long and deep lineage. Recognition and exploration of this lineage can inform how we communicate about mental health going forward, as reflected by the 9 papers which make up this special issue. Our introduction provides some framework for the history of communicating mental health over the past 300 years. We will show that there have been diverse ways and means of describing, disseminating and discussing mental health, in relation both to therapeutic practices and between practitioners, patients and the public. Communicating about mental health, we argue, has been informed by the desire for positive change, as much as by developments in reporting, legislation and technology. However, while the modes of communication have developed, the issues involved remain essentially the same. Most practitioners have sought to understand and to innovate, though not always with positive results. Some lost sight of patients as people; patients have felt and have been ignored or silenced by doctors and carers. Money has always talked, for without adequate investment services and care have suffered, contributing to the stigma surrounding mental illness. While it is certainly ‘time to talk’ to improve experiences, it is also time to change the language that underpins cultural attitudes towards mental illness, time to listen to people with mental health issues and, crucially, time to hear.

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 2017, part one by Aaron Seaman

Anthropology and Aging (open access)

The Social Context of Collective Physical Training among Chinese Elderly: An Anthropological Case Study in a Park in Beijing

Yeori Park

This study analyzes the social context in China where the elderly participate in collective physical training, a cultural activity specific to the country. For this study, senior citizens aged 60 or above who participated in collective physical training in a park in Beijing were observed for five months. Research results found that collective physical training enables formation of social networks providing mutual caring and support. On the other hand, the participants conform to the self-disciplined modern discourse to survive in the post-Mao society. They do collective physical training due to their social conditions, such as the poorly established welfare system for the aged, severance pay that is too low to cover medical expenses. Although the participants seem to autonomously choose collective physical training based on their own preferences, the context of Chinese society, including hidden government intentions, leads the elderly to participate in training activities.

Social Contract on Elderly Caregiving in Contemporary Chile

Carola Salazar

This paper explores the definitions of social contract on elderly caregiving among a group of seven Chilean aging experts. The data show that for Chileans, family remains a strong institution that should provide care of its members, with daughters or daughters-in-law being the preferred person to provide care. Also, age segregation, along with the gradual privatization of services such as health care and the pension system, promotes individuality: this can become a problem for future generations because they are no longer concerned with helping others.

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

What’s At Stake in Speculation? by Matthew Wolf-Meyer

We’ve long been thinking about health, well-being, illness, sickness, and disease, in relation to risk. That things might not be maintained at their present levels, either individually, among our cared-for, or socially, is not something new, even if we’ve entered a period of intensification, with calls to ‘repeal and replace’ the Affordable Care Act, and the slow, often subtle chipping away at social safety net policies in the United States and throughout the North Atlantic in the spirit of austerity and for the sake of freedom. What might have been primarily personal and interpersonal concerns about health and disease have also expanded to include the environment and the species, as we continue to think through the Anthropocene and its consequences for exposures to environmental dangers – toxins and radiation foremost among them – and the spread of once localized diseases to the global stage, as the recent zika outbreak raised, and Ebola recurrently threatens. The intensification and generalization of risk may very well entail the intensification and generalization of speculation; what are our individual and collective possible futures? And what better way to confront our possible futures than through media that explicitly engages with the future, speculative and science fiction?

Is speculation fundamental to life itself? That’s the question that Steve Shaviro seeks to answer in his recent Discognition. Shaviro argues that sentience itself – which we might see operating in computer programs, plants, slime mold, and emergent technologies – is founded on the existence of the ability to speculate, to anticipate and plan. We may not be able to infer how speculation works for a sentient computer program or a slime mold, yet, they depend upon an ability to forecast, to imagine what may come next, so as to act appropriately in advance.

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

The non-identity problem of professional philosophers

By Charles Foster

Philosophers have a non-identity problem. It is that they are not identified as relevant by the courts. This, in an age where funding and preferment are often linked to engagement with the non-academic world, is a worry.

This irrelevance was brutally demonstrated in an English Court of Appeal case,  (‘the CICA case’) the facts of which were a tragic illustration of the non-identity problem.

M (‘the mother’) was raped repeatedly by her father. She gave birth to Y, who, because of the incest, suffered from a serious genetic disorder. Y claimed compensation under the Criminal Injuries Compensation Scheme. She was not entitled to compensation, said the Court of Appeal.

Why?

The President of the Queen’s Bench Division, Sir Brian Leveson said:

I would construe the 2008 Scheme to mean that the victim of the crime of violence in this case could only be M (with the result that she was entitled to receive compensation for the personal consequences to her of her father’s actions). To suggest that Y, who had not been conceived at the time of the crime, was himself a victim of crime (the nature of the crime involved being difficult to discern) or that it is possible to assess compensation on the postulate that Y would otherwise have been born without disability and so should be compensated for the genetic disorder from which he suffers is to go beyond that which the Scheme was seeking to cover.’1

He cited with approval2 the following passage from a Scottish case (Millar (Curator Bonis to AP) v Criminal Injuries Compensation Board)3, which was concerned with materially identical facts:

‘It appears to me that the concept of injury, in the context of a situation in which compensation for it must be assessed, presupposes a pre-injury state which is capable of assessment and comparison with the post-injury state.

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 Cure Genetic Diseases?

June 07, 2017

by Professor Bonnie Steinbock

Should We Cure Genetic Diseases?

In “Trying to Embrace a ‘Cure’,” (New York Times, June 4, 2017), Sheila Black notes that in the near future there may be a treatment that could amount to a cure for the genetic illness she and two of her children have — X-linked hypophosphatemia or XLH. Although XLH is not life threatening, it has significant disadvantages, including very short stature (short enough to qualify as a type of dwarfism), crooked legs, poor teeth, difficulty in walking, and pain. A cure would seem to be cause for celebration.

But Ms. Black is ambivalent about the prospect. Although she acknowledges the potential benefits both to individuals and to society, the issue is, for her, complex.

Having a serious disability may enable the development of certain virtues. She writes, “… to be human often entails finding ways to make what appears a disadvantage a point of strength or pride.” Or, as Nietzsche put it,  “That which does not kill us, makes us stronger.”

It’s very likely that having polio made Franklin Roosevelt emotionally more mature and strengthened his character, but would that be a reason to oppose the development of the Salk vaccine? Comedians often credit their talent from having been bullied as children; novelists and playwrights find inspiration in their awful childhoods. Admiring their ability to overcome adversity does not mean being ambivalent about ending bullying and child abuse.

Another reason is that disabilities have created communities that are a source of support and identity.

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

The Opioid Crisis Changed How Doctors Think About Pain

Williamson has some of West Virginia’s highest rates of obesity, disability, and arthritis — in a state that already ranks among the worst in those categories. An adult in Williamson has twice the chance of dying from an injury as the average American. This is why the opioid crisis is so hard to handle, here and in so many communities: The underlying drugs are often being prescribed for real reasons

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.