Tag: whites

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 Blogs

Memo To White Nationalists From A Geneticist: Why White Purity Is A Terrible Idea

On
August 14th, UCLA researchers Aaron Panofsky and Joan Donovan presented
findings of their study,  “When Genetics Challenges a Racist’s Identity: Genetic
Ancestry Testing among White Nationalists,”
 at a sociology
conference in Montreal. They’d analyzed 3,070 comments organized into 70
threads publicly posted to the (sometimes difficult to access) “social movement
online community”  Stormfront.

Former
KKK Grand Wizard Don Black launched Stormfront on March 27, 1995. Posts exceed
12 million, ramping up since the 2016 election season. Panofsky and Donovan’s
report has a lot of sociology speak, such as “scholars of whiteness” and
“affiliative self-fashioning,” amid some quite alarming posts – yet also
reveals a sophisticated understanding of genetics from some contributors.

A
WHITE NATIONALIST ONLINE MEET-UP: STORMFRONT

“We are the voice of the new, embattled White minority!”proclaims the
bold, blood-tinged-hued message on the opening page of Stormfront, the “community
of racial realists and idealists.”
 It’s a site for white nationalists,
who are a little less extreme than white supremacists, who want to dominate the
world from their pinnacle of a perceived racial hierarchy. The Stormfronters
seem more concerned with establishing their white purity – defined as “non-Jewish
people of wholly European descent.”

Yet
the lines between white nationalist and supremacist blur, as Stormfront states, “If Blacks or
Mexicans become a majority, then they will not be able to maintain the White
man’s social, cultural and economic systems because they do not have to (sic)
minds needed to do so.”

The
idea of white rights is rather new, catalyzed by the revolts of the truly
marginalized, murdered, abused, ignored, and enslaved.

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

Memo To White Nationalists From A Geneticist: Why White Purity Is A Terrible Idea

On
August 14th, UCLA researchers Aaron Panofsky and Joan Donovan presented
findings of their study,  “When Genetics Challenges a Racist’s Identity: Genetic
Ancestry Testing among White Nationalists,”
 at a sociology
conference in Montreal. They’d analyzed 3,070 comments organized into 70
threads publicly posted to the (sometimes difficult to access) “social movement
online community”  Stormfront.

Former
KKK Grand Wizard Don Black launched Stormfront on March 27, 1995. Posts exceed
12 million, ramping up since the 2016 election season. Panofsky and Donovan’s
report has a lot of sociology speak, such as “scholars of whiteness” and
“affiliative self-fashioning,” amid some quite alarming posts – yet also
reveals a sophisticated understanding of genetics from some contributors.

A
WHITE NATIONALIST ONLINE MEET-UP: STORMFRONT

“We are the voice of the new, embattled White minority!”proclaims the
bold, blood-tinged-hued message on the opening page of Stormfront, the “community
of racial realists and idealists.”
 It’s a site for white nationalists,
who are a little less extreme than white supremacists, who want to dominate the
world from their pinnacle of a perceived racial hierarchy. The Stormfronters
seem more concerned with establishing their white purity – defined as “non-Jewish
people of wholly European descent.”

Yet
the lines between white nationalist and supremacist blur, as Stormfront states, “If Blacks or
Mexicans become a majority, then they will not be able to maintain the White
man’s social, cultural and economic systems because they do not have to (sic)
minds needed to do so.”

The
idea of white rights is rather new, catalyzed by the revolts of the truly
marginalized, murdered, abused, ignored, and enslaved.

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

Walk In or Get Out: Overcoming Distrust of Medicine to Improve Outcomes

by Jennifer Cohen                                         

“Get Out” Universal 2017    

“Get Out” Universal 2017    

“Get Out” Universal 2017    

“Frankenstein” Universal 1931

“Frankenstein” Universal 1931

“Frankenstein” Universal 1931

Popular culture has long provided an outlet for feelings of powerlessness toward medicine. 19th century novels Frankenstein and The Island of Dr. Moreau tapped into fears that medicine would cruelly pursue scientific knowledge at the expense of human life. Two recent films, The Immortal Life of Henrietta Lacks and Get Out, examine the anxieties and mistrust that African Americans, in particular, experience toward the medical community in the modern era.  

Henrietta Lacks depicts a historical breach of ethics by researchers at Johns Hopkins University, whose work obscured the identity of Ms. Lacks’ “immortal” cell line and withheld attribution both to Ms. Lacks and her family for decades. In the film, this wrong exacerbates over time as the family struggles emotionally to understand the uses of their mother’s cells and to accept their mother’s consent was never considered necessary. Indeed, the family believed that members of their community were routinely used for experimentation without their consent: they tell journalist Rebecaa Skloot that, as children, they were warned by their parents to get off the streets at night or “Hopkins people” would snatch them up.

In Get Out, a nightmarish surgical practice occurs in which a neurosurgeon and psychiatrist lure African Americans to their home for use as receptacles for white brains in a bid for white immortality. Both of these films explore the premise that African-Americans should be afraid medicine will treat them differently from white individuals.

The ugly history of abuse toward African Americans in the name of medical research was extensively documented in 2006 by the bioethicist Harriet A.

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

Do Americans suddenly like Obamacare?  Contextualizing opinion polls and media narratives by Jessica Mulligan

“Repeal and replace” has been the rallying cry for opponents of the Affordable Care Act (ACA or Obamacare), the signature domestic policy of the Obama administration that expanded insurance coverage to 20 million people. Opposition to the ACA inspired populist social movements and helped elect Republicans to state and national office. Donald Trump tweeted hundreds of times that Obamacare was a “disaster” and promised to repeal and replace the health law. And yet, since he took office in 2017, public opinion polling shows that more Americans hold favorable views than unfavorable views of the law, reversing previous trends. Constituents have confronted members of Congress at rowdy town hall meetings and demanded that their health coverage be protected. Bewildered Republicans and health policy wonks are scratching their heads, trying to make sense of the sudden surge in support for what has been an unpopular law. Finally ready to make good on their campaign promises to repeal and replace, Republicans are met by desperate Americans, many with preexisting conditions, who fear their coverage will soon disappear.

Here, we explore this pendulum shift in public opinion poll results about the popularity of the ACA. We argue that, in fact, many pollsters and policy wonks never really understood the complicated assessments that people held of the ACA in the first place. A question about favorable or unfavorable views fails to capture the stakes of the ACA for those with and without health insurance. Poll data show that major reasons for disliking the health reform included increased costs, that it created too big a role for government, that it took the country in the “wrong direction” under President Obama, and that it did not go far enough in expanding coverage.

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

Health Affairs Briefing: Advanced Illness And End-Of-Life Care

Few areas of health
care are as personal, or as fraught, as care for people with serious
illnesses who are approaching death. At a point in their lives when their
needs are often as much social and spiritual as they are medical, people
are confronted with a fragmented, rescue-driven health care

system that produces
miraculous results but also disastrous failures.


As the nation’s population of individuals over the age of 65 is expected to
reach 84 million by 2050, addressing these challenges becomes increasingly
important, requiring coordination across multiple sectors and levels of
government. Innovations are needed to produce improvements in care
delivery; better communication between clinicians, patients and families; greater
uptake of advance care planning tools; and payment systems and policies
that support patient needs and preferences. 


The July 2017 issue of Health Affairs, “Advanced Illness and End-of-Life Care”
includes a comprehensive look at these issue and others. In addition, HA
is hosting a forum at the National Press Club on
Tuesday, July 11.


Topics covered will include:

  • Care At The End Of Life
  • Financing & Spending
  • Quality Of Care &
    Patient Preferences
  • Hospice & Palliative
    Care

The program will
feature the following presenters:

  • Melissa Aldridge, Associate
    Professor, Department of Geriatrics and Palliative Medicine, IcahnSchool
    of Medicine at Mount Sinai, on Epidemiology And Patterns Of Care At The
    End Of Life:Rising Complexity, Shifts In Care Patterns And Sites of Death
  • Rachelle E. Bernacki,
    Director of Quality Initiatives, Psychosocial Oncology and PalliativeCare,
    Dana Farber Cancer Institute; Assistant Professor, Harvard Medical School;
    and Associate Director, Serious Illness Care Program, Ariadne Labs, on A
    Systematic Intervention To Improve Serious Illness Communication In
    Primary Care
  • Julie Bynum, Associate
    Professor Geisel School of Medicine, Dartmouth, on High-Cost Dual Eligible
    Service Use Demonstrates Need For Supportive And Palliative Models Of Care
  • Janet Corrigan, Chief
    Program Officer for Patient Care, Executive Vice President, Gordon and
    Betty Moore Foundation
  • Katherine Courtright,
    Instructor of Medicine, Division of Pulmonary, Allergy, and Critical Care
    Medicine University of Pennsylvania Health System on Approximately One In
    Three US Adults Completes Any Type Of Advance Directive For End-Of-Life
    Care
  • Robrecht De Schreye,
    Researcher, End of Life Care, University of Brussels, on Applying
  • Quality Indicators From
    Linked Databases To Evaluate End-Of-Life Care For Cancer Patients In
    Belgium
  • Rachel Dolin, Fellow, David
    A.

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

Improving End-of-Life Care for African-Americans through Advance Care Planning in Partnership with Faith Communities

Leslie McNolty

The Center for Practical Bioethics has worked on end-of-life issues and advance care planning for more than three decades. Over the years, we’ve been enlightened and encouraged by the six reports that the National Academy of Medicine has issued on palliative and end-of-life care in the USA. These reports clearly establish that palliative care and hospice are essential to address suffering and quality care for the seriously and terminally ill. Research also shows that improving shared decision-making processes, such as advance care planning, provide a path to greater satisfaction for families experiencing the death of a loved one. We know that individuals who complete advance directive documents are more likely to have their preferences for end-of-life care respected — particularly the preference to die at home in hospice care. 

We also noticed with increasing alarm that African-Americans typically do not share in the benefits of advance care planning, palliative care and hospice care to the same extent that white Americans do. Statistics from the National Hospice and Palliative Care Organization consistently show severe underutilization of hospice by African-Americans – whites make up more than 80% of hospice utilization on a national level, with African-American utilization at about 8%. This disparity in hospice and palliative care utilization is particularly striking because African-Americans die at excessive levels from chronic diseases. 

Barriers and Opportunities

Unfortunately, there are significant barriers to implementing advance care planning tools in African-American communities. Many harbor a deep distrust of the traditional healthcare system stemming from egregious ethical violations in the past. Furthermore, African-Americans, who according to Pew Research Studies are know the most religious racial group in the USA, have significant religious concerns about advance care planning.

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

Incidental White Privilege

STUDENT VOICES

By Jade Reyes

Not every issue of morality that we are faced with is easily discernible— with an easily ascertainable correct action. Many of these issues are nuanced and multifaceted, affecting every person differently and involves a weighing process between imperfect alternatives. One of those issues is race or ethnicity and furthermore the perceptions and assumptions that come hand in hand. Race and racial prejudice are intricately woven into the fabric of American history. While the most prominent struggle between Whites and Blacks is entrenched in the legacy of slavery, another more subtle battle persists. This battle, in my personal experience, blurs the line of ethical and moral behavior in many settings; particularly social and business relations. This struggle is the plight of those who pass for another race– specifically those non-Whites who may be perceived as White, such as myself. This presents a unique moral and ethical challenge: having to toe the line between my ‘by chance’ white privilege and allegiance to my ethnic background.

Often the struggle to which I refer is given the name of colorism, in which light skin tones are preferred and fare better in arbitrary categories when compared to darker skin tones. There is this persistent trend; according to the historical record that having lighter skin regardless of your racial or ethnic origin is a good thing— a door opener if you will. For fair-skinned Latinas like myself, the identifier of white is available to me, but it comes as a powerful oxymoron to define myself as a white-Latino.

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

Incidental White Privilege

STUDENT VOICES

By Jade Reyes

Not every issue of morality that we are faced with is easily discernible— with an easily ascertainable correct action. Many of these issues are nuanced and multifaceted, affecting every person differently and involves a weighing process between imperfect alternatives. One of those issues is race or ethnicity and furthermore the perceptions and assumptions that come hand in hand. Race and racial prejudice are intricately woven into the fabric of American history. While the most prominent struggle between Whites and Blacks is entrenched in the legacy of slavery, another more subtle battle persists. This battle, in my personal experience, blurs the line of ethical and moral behavior in many settings; particularly social and business relations. This struggle is the plight of those who pass for another race– specifically those non-Whites who may be perceived as White, such as myself. This presents a unique moral and ethical challenge: having to toe the line between my ‘by chance’ white privilege and allegiance to my ethnic background.

Often the struggle to which I refer is given the name of colorism, in which light skin tones are preferred and fare better in arbitrary categories when compared to darker skin tones. There is this persistent trend; according to the historical record that having lighter skin regardless of your racial or ethnic origin is a good thing— a door opener if you will. For fair-skinned Latinas like myself, the identifier of white is available to me, but it comes as a powerful oxymoron to define myself as a white-Latino.

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

Why Is It So Hard to Close the Racial Health Gap in the US

Improvements in the health care system have increased life expectancy for most Americans, but the group that has gained more is white Americans. The larger health gain of whites than blacks results in widening of racial gap in 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.