Tag: discrimination

Bioethics Blogs

Politics of Pain: Investigating the Ethics of Palliative Care as a Global Human Right

by Alix Masters

Within the last decade, strides have been made in the field of global health policy to extend the reaches of palliative care universally.  In 2014, the World Health Organization formally declared palliative care a global human right.[1] This development in global health policy is a positive one when we consider the medical politics of pain relief across racial difference.  Both in the United States and abroad, there is a long medical history of discriminatory practices against certain groups of people with regard to pain management—including withholding necessary pain medication altogether.  Therefore, in many ways the declaration of palliative care as a human right is a necessary step in ensuring all peoples, regardless of identity, have their pain taken seriously by the medical establishment and have their comfort made a medical priority.  When we consider how different cultures negotiate beliefs around death and pain relief, however, the issue of palliative care as a universal human right becomes more complex.  For example, countries with strong histories of Buddhist thought and culture have traditionally opposed the ideology of palliative care.[26]  In Buddhism, suffering is considered an inextricable part of life and masking this suffering through medical intervention is looked down upon.[2]  For example, Vietnam, a country with a culture strongly imbued with Eastern Buddhist values, has a long history of rejecting palliative care and pain medications in general.[26]  Due to this, the World Health Organization’ declaration that palliative care is a universal human right could also be understood as a Western organization blatantly ignoring Buddhist cultural traditions. 

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

Book Review: Cells Are The New Cure (BenBella Books, Inc., 2017). ISBN 9781944648800.

$26.95. Reviewed by Michael S. Dauber, MA

 

Cells Are The New Cure, written by Robin Smith, MD, and Max Gomez, PhD, is a book about the history of medical research on cells, both human and non-human, and recent developments in these techniques that have made cellular medicine one of the most promising fields for therapeutic exploration. While the book’s title suggests an exclusive focus on the healing aspects of genetic modification and human stem cell therapy, the text is much more than that: it is a roadmap for understanding the origins of such techniques, the current state of affairs in cellular and genetic therapies, the administrative landscape investigators must traverse in conducting research, and the areas in which we still need to make progress.

Smith and Gomez make an argument that is structurally simple yet gripping: they suggest that targeted therapies involving stem cells and genetic modifications are the future of medicine by pointing to the immense amount of studies in those fields that have yielded beneficial results. While many readers might acknowledge this fact even before reading the book, many may not be aware of the full extent of the knowledge we have gained from research on cells and genetics, or the myriad ways this knowledge has been applied. Of course, Smith and Gomez cover the big diseases that most people think of when imagining medical research: cancer, heart disease, neurodegenerative conditions, etc. However, the book also contains detailed information about how we age, what may cause certain allergies, how the body repairs itself, and the ways stem cell therapies, genetic editing techniques, and other complex medicines that build on these methods can be used to treat these conditions.

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

A Feminist Neuroethics of Mental Health

By Ann E. Fink
Ann Fink is currently the Wittig Fellow in Feminist Biology at the University of Wisconsin–Madison, with an appointment in Gender and Women’s Studies and concurrent affiliations with Psychology and the Center for Healthy Minds. Her research in cellular and behavioral neuroscience has appeared in the Journal of Neuroscience, Journal of Neurophysiology, PNAS and other journals. Ann’s interdisciplinary work addresses the ethics of neuroscience in relation to gender, mental health and social justice. 

Emotionality and gender are tied together in the popular imagination in ways that permeate mental health research. At first glance, gender, emotion, and mental health seem like a simple equation: when populations are divided in two, women show roughly double the incidence of depression, anxiety, and stress-related disorders1-3. Innate biological explanations are easy to produce in the form of genes or hormones. It could be tempting to conclude that being born with XX chromosomes is simply the first step into a life of troubled mood. Yet, buried in the most simplistic formulations of mental illness as chemical imbalance or mis-wiring is the knowledge that human well-being is a shifting, psychosocial phenomenon. Learning and memory research offers a treasure trove of knowledge about how the physical and social environment changes the brain. Feminist scholarship adds to this understanding through critical inquiry into gender as a mode of interaction with the world. This essay explores how a feminist neuroethics framework enriches biological research into mental health. 
Problems with “Biology-from-birth” stories 
What if understanding gender and health isn’t a tale of two gonads (or genitalia, or chromosomes)?

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 Opioid Epidemic is an Epidemic of Stigma

Kristie Serota and Daniel Z. Buchman argue that eradicating the stigma associated with opioid use is an ethical necessity and is critical for population health.

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The Government of Canada reports that over 2458 Canadians died of apparent opioid-related deaths in 2016 (excluding Quebec). Last November, an average of 4 people died from overdoses every day in British Columbia. Recent U.S. estimates project opioid-related deaths at over half-a-million people over the next decade. Interventions have been implemented in many jurisdictions to minimize opioid-related mortality, but each year the death toll continues to rise and shows no signs of relenting.

While people dying from opioids in large numbers is not new, the present epidemic arose due to several complex factors. For example, OxyContin was aggressively marketed and prescribed for chronic non-cancer pain. Doctors and the public were misled about OxyContin’s addiction risks. In addition, health professionals receive limited training on pain and addiction. There are also inequities due to the social determinants of health and the harmful effects of substance use-related stigmas.

Stigma, operating at individual, institutional, and social levels, has led to punitive legal, policy, and clinical responses toward people who use drugs. Stigma has also led to chronic underfunding of addiction research and treatment services relative to the burden of disease. Although the current epidemic does not discriminate across the social gradient, stigma disproportionately burdens people from less privileged social groups more frequently and harmfully than others. People with no history of a substance use disorder risk the pejorative label of ‘addicts’ when they are prescribed opioids for pain management.

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

Striking a Balance

By Peter Young

 

In April of this year, the Berman Institute and Johns Hopkins Hospital Ethics Committee held its monthly Ethics for Lunch case presentation focusing on how to manage patients who make racist, sexist, and otherwise offensive comments. The discussion, moderated by Dr. Joseph Carrese, featured panelists who have experienced racism/sexism in the clinic, and it allowed audience to gain insight from their perspectives.

 

During the discussion, there was mention that minority patients in an in-patient setting cannot choose their own doctor based solely on race, because Hopkins’ practice is to pair the best doctor with a patient’s medical needs. I was a bit confused how minority patients not being able to choose race-based concordance in an in-patient setting fits into the larger, nation-wide conversation of minority groups wanting safe spaces. For example, some argue the race of the physician affects the quality of care, and when the provider and patient’s race align, the provider can speak better to certain beliefs, religious practices, nutritional knowledge, and cultural norms. Also, there may be even subtler, yet equally important benefits of having your provider look like you, especially in our current political climate. This includes patient-compliance as well as the potential for less polarizing power dynamics in the provider-patient relationship.

 

Scholars like Dr. Dayna Bowen Matthew, author of Just Medicine and professor at University of Colorado, might argue that if a white, middle-class person tells an intercity, minority person to take their medication, that patient may be less likely to adhere.

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

Some Comments about Being a Philosopher of Color and the Reasons I Didn’t Write a (Real) Paper for this (Seemingly) Ideal Venue for my Work

by Sean A. Valles

ABSTRACT. This special issue conspicuously lacks work by Philosophers of Color (with the exception of this commentary). I have been given this opportunity to discuss the impediments that kept me from submitting my relevant work, offered as a small step toward recognizing the impediments faced by other Philosophers of Color. I highlight factors including direct and indirect consequences of a disproportionately White community of US philosophers, and some underrecognized risk-reward calculations that Philosophers of Color face when choosing an article project. I urge further discussion of the topic, starting with an exhortation to choose the right phenomenon and accordingly frame the right question: Why are White philosophers deliberating the “ethical and social issues arising out of the 2016 US presidential election” in a prestigious journal, while Philosophers of Color are deliberating the same issues in tense classrooms, closed offices, and on-/off-campus forums?

This is not a real article. But in this special issue on the 2016 US election and Trump it is, to my knowledge, the only contribution written by a Philosopher of Color. It is a commentary about the fact that it is the only contribution written by a Philosopher of Color.

After Editor-in-Chief Rebecca Kukla expressed consternation that the issue was full of excellent papers, but written by a roster of White philosophers, I offered to say something about why I didn’t submit any of my relevant philosophical work (on nativism, racism, health policy, Latinx health, etc.), and why it didn’t surprise me that almost none of the other well-qualified Philosophers of Color did either.

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

Salk Institute Under Fire For ‘Smear’ On Women Suing It For Discrimination

July 20, 2017

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Leaders of the San Diego, California, research center have strenuously denied the allegations made by biologists Vicki Lundblad and Katherine Jones, and publicly questioned their productivity and the quality of their scientific work.

The case has divided the institute’s staff, and Salk’s statements about the women have drawn social media dismay and rebukes from prominent biologists, including Nobel laureates. “The fact that an institution would treat its own distinguished faculty in this way is very disturbing,” says Nancy Hopkins, professor emerita of biology at the Massachusetts Institute of Technology (MIT) in Cambridge, who in the late 1990s led a groundbreaking review of MIT’s treatment of its female faculty.

Salk President Elizabeth Blackburn said in a statement that she is “saddened that an institute as justly revered as the Salk Institute is being misrepresented by accusations of gender discrimination. … I would never preside over an institute that in any way condoned, openly or otherwise, the marginalizing of female scientists.”

… Read More

Image: By TheNose – http://www.flickr.com/photos/tatler/339218853/, CC BY-SA 2.0, https://commons.wikimedia.org/w/index.php?curid=1708238

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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 News

Disability Rights Advocates Sue Uber for Wheelchair Inaccessible Cars

Nonprofit organization Disability Rights Advocates has filed a class-action lawsuit against Uber, claiming that the ride service discriminates against riders with disabilities in New York City. Filed in New York State Supreme Court in Manhattan on Tuesday, July 18th, the suit is founded on the accusation that Uber does not supply enough available wheelchair-accessible cars through its app.

According to the New York Times, the lawsuit alleges that though Uber provides wheelchair-accessible cars through its related service UberWAV, the specially equipped vehicles “account for a tiny fraction of the 58,000 for-hire cars dispatched by Uber in New York City’s five boroughs” and that “this already limited pool of cars can be used for other riders, and… may be unavailable when needed by those with disabilities.”

Filed on behalf of numerous advocacy organizations and individual New Yorkers, the lawsuit comes after two discrimination lawsuits against the Metropolitan Transportation Authority regarding the subway system’s dearth of elevators and lifts. The suit requests that the court order Uber to “develop and implement a remedial plan to ensure full and equal access to its services for riders who require accessible transportation.”

For its part, Uber has in the past offered monetary incentives to drivers of wheelchair-accessible cars. It has also suggested that New York City law implement an “accessibility fee” on certain types of rides across companies to raise funds for further monetary incentives. The case raises notable questions regarding civil and corporate duties to persons with disabilities.

The post Disability Rights Advocates Sue Uber for Wheelchair Inaccessible Cars appeared first on Global Bioethics Initiative (GBI).

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

Responsibility in the age of precision genomics

by Alexa Woodward

Alexa is a fellow in the Precision Medicine: Ethics, Policy, and Culture project through Columbia University’s Center for the Study of Social Difference. The following is her reflection on the ongoing discussion around the Precision Medicine Initiative that has been the subject of recent political, social, and popular media attention. A recent presentation by Sandra Soo-Jin Lee, PhD, from the Center for Biomedical Ethics at Stanford University spurred our multi-disciplinary discussion of some of the following themes.

What is normal, anyway?

Genetically speaking, that’s precisely the question that the Obama administration’s Precision Medicine Initiative (PMI) seeks to answer. In recruiting and collecting comprehensive genetic, medical, behavioral, and lifestyle data from one million Americans, the scientific and medical communities will be better able to understand what constitutes normal genetic variation within the population, and in turn, what amount of variation causes or contributes to disease or disease risk.[1] Using this data, researchers could potentially create tailored approaches for intervention and treatment of an incredible range of diseases.

The PMI has a secondary aim: to increase the representation of previously underrepresented populations in research – primarily African Americans and Hispanics/Latinos. Inclusion of these groups in research has been a challenge for decades, with lack of access, distrust in the medical and research systems, and institutionalized racism all playing exclusionary roles. More broadly, outside of the government initiative, the promise of precision medicine ultimately seeks to alleviate disparities by finding and addressing supposed genetic differences, and empowering people with information to take responsibility for their health.

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.