Tag: Tuskegee

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

Honors for Racist Scientists

September 7, 2017

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Historians like to say that everything has a history. Yet the natural sciences remain somewhat removed from academic debates over what to do with monuments tied to dark chapters in American history.

That’s changing, though.

In a twist to discussions about campus memorials linked to slavery and racism, the natural sciences are facing new questions about monuments tied to eugenics and to individuals who denied basic rights to those nonwhite people on whom they did research.

In one example, scientists and other academics lit up social media Wednesday in a response to an editorial in Nature called “Removing Statues of Historical Figures Risks Whitewashing History.” Some critics objected to the term “whitewashing” itself, saying that leaving memorials to eugenicists and other problematic figures unchallenged is the real whitewashing.

… Read More

Image: By ESO/M. Kornmesser (photo displayed on the magazine cover) – https://www.eso.org/public/images/ann16056a/ (photo displayed on the magazine cover), CC BY 4.0, https://commons.wikimedia.org/w/index.php?curid=50998461

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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

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

The 2017 Common Rule and the Clinical Ethics of Prolixity

Some bioethicists link the beginnings of our field to the Nazi Medical experiments and the Nuremberg Trial (Annas). Whether this is the beginning of bioethics is debatable, but without a doubt, research ethics has been a central topic in the field. In fact, the very first federal bioethics commission laid out the principles of research ethics in the Belmont Report. Later, the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research recommended to the President and Congress that a uniform framework and set of regulations should govern human subjects research.  This effort reached fruition under The Federal Policy for the Protection of Human Subjects or the “Common Rule” that was issued in 1991.  Since then, there have been no major changes to the regulations – until now.  After a five-year process and thousands of comments, the new “final rule” was released on January 19th, 2017.  The July 2017 issue of the American Journal of Bioethics addresses these changes.  In addition to our usual open peer commentaries, we are posting a number of blog posts written in response to the AJOB target article.

The following is a re-post of Steven Mile’s original February 2017 post.


by Steven H. Miles, MD

The new Common Rule to protect human subjects has an extraordinarily large and diverse audience.[i] The new Rules defines the obligations of an enormous number of personnel at the National Institutes of Health as well as virtually any other government agency engaged in research with human subjects. The Rules define the requisite knowledge, training, and work of staff who oversee and conduct clinical research in 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

Tune Ups to Belmont & Common Rule Need to Consider Community-Engaged Research

Some bioethicists link the beginnings of our field to the Nazi Medical experiments and the Nuremberg Trial (Annas). Whether this is the beginning of bioethics is debatable, but without a doubt, research ethics has been a central topic in the field. In fact, the very first federal bioethics commission laid out the principles of research ethics in the Belmont Report. Later, the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research recommended to the President and Congress that a uniform framework and set of regulations should govern human subjects research.  This effort reached fruition under The Federal Policy for the Protection of Human Subjects or the “Common Rule” that was issued in 1991.  Since then, there have been no major changes to the regulations – until now.  After a five-year process and thousands of comments, the new “final rule” was released on January 19th, 2017.  The July 2017 issue of the American Journal of Bioethics addresses these changes.  In addition to our usual open peer commentaries, we are posting a number of blog posts written in response to the AJOB target article.


by Eric Wat MA, Nancy Shore PhD, Sarena D Seifer MD, CCPH, Lola Sablan-Santos, Alice Park MPH, Mei-Ling Isaacs MPH, Ahahui Malama I Ka Lokahi, Kelly Edwards PhD, Elaine Drew PhD, John Cooks, Paige Castro-Reyes BS BA, CCPH

We concur with Friesen and colleagues’ (2017) assertion that the Belmont Report requires, at a minimum, a “tune-up” to better reflect the unique ethical values and demands of community-engaged research (CEnR).

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 & Society Newsfeed: June 2, 2017

Image via

Politics and World News
White House Waivers May Have Violated Ethics Rules
White House waiver allows all White House aids to communicate with news organizations, even if they involve a “former employer or former client.” Stephen K. Bannon, senior White House strategist, will be able to communicate with editors at Breitbart News.

A Vocal Defender of Ethics Has Fans — and Foes
Walter M. Shaub Jr., director of the Office of Government Ethics, is one of the few people in government willing to second-guess President Trump and his advisers.

New public ethics bill aims to repair France’s battered trust in politicians
French Justice Minister François Bayrou  outlined bill to promote probity in politics, a first major legislative initiative for President Emmanuel Macron’s government at a time where mistrust of elected officials is soaring.

South Korea’s Moon Struggles to Form a Cabinet Meeting His Ethics Standards
South Korean President Moon Jae-in, in an attempt to break with previous corruption and scandal with predecessor Park Geun-hye, is aiming for a “squeaky-clean government” with cabinet candidates.

Bioethics and Medical Ethics

Move over Hippocrates: Harm reduction as the new paradigm for health care
“Doctors routinely cause their patients harm. The oath we should be taking is, “Help others with as little harm as possible.”

Resurrected: A controversial trial to bring the dead back to life plans a restart
Scientists expected to launch a study that will use stem cells in an attempt to reverse brain death. Injection of these cells have been used in clinical trials to treat diabetes, macular degeneration, ALS, etc.

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 & Society Newsfeed: June 2, 2017

Image via

Politics and World News
White House Waivers May Have Violated Ethics Rules
White House waiver allows all White House aids to communicate with news organizations, even if they involve a “former employer or former client.” Stephen K. Bannon, senior White House strategist, will be able to communicate with editors at Breitbart News.

A Vocal Defender of Ethics Has Fans — and Foes
Walter M. Shaub Jr., director of the Office of Government Ethics, is one of the few people in government willing to second-guess President Trump and his advisers.

New public ethics bill aims to repair France’s battered trust in politicians
French Justice Minister François Bayrou  outlined bill to promote probity in politics, a first major legislative initiative for President Emmanuel Macron’s government at a time where mistrust of elected officials is soaring.

South Korea’s Moon Struggles to Form a Cabinet Meeting His Ethics Standards
South Korean President Moon Jae-in, in an attempt to break with previous corruption and scandal with predecessor Park Geun-hye, is aiming for a “squeaky-clean government” with cabinet candidates.

Bioethics and Medical Ethics

Move over Hippocrates: Harm reduction as the new paradigm for health care
“Doctors routinely cause their patients harm. The oath we should be taking is, “Help others with as little harm as possible.”

Resurrected: A controversial trial to bring the dead back to life plans a restart
Scientists expected to launch a study that will use stem cells in an attempt to reverse brain death. Injection of these cells have been used in clinical trials to treat diabetes, macular degeneration, ALS, etc.

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

When Ideology Trumps Reason, Do The Life Sciences Resist or Capitulate?

by Craig Klugman, Ph.D.

The world of the life sciences and medicine is being changed radically in 2017. The proposed Trump budget cuts funding for the CDC, NIH, NSF, NEH, NEA, EPA, and PHS will radically change how science is done, how much science is done and by whom. The US is withdrawing from the Paris Climate Treaty. Cuts to social security that traditionally pays for medical residents have also been proposed. The American Health Care Act will take affordable health insurance away from 23 million people. For the rest of us, the AHCA means higher premiums and less coverage. At the same time, we live in an era of “fake news,” “leaks,” incendiary tweets, and loyalty as the sign of someone’s worth. What might be the impact on medicine, the life sciences and bioethics in the Trumpian era? Will the dominant political ideology affect the practice of science and medicine in more ways than economics? Can ethics help steer a course around ideology?

One change that has already occurred under Trump is an anecdotal decrease in the number of immigrants (documented and undocumented) who are seeking medical care under concern that they will be deported if they show up to hospitals and doctor’s offices. In one case, a woman was forcibly removed the hospital where she was to be treated for a brain tumor and brought to a detention center.

Certainly, there is a U.S. history of medicine following the ideology of the government. Forced sterilization, the Tuskegee Syphilis study, the US radiation experiments and the Guatemala Syphilis studies were all government financed research created to prove a particular ideology: In these cases, species-level differences between the races and that a nuclear war was “winnable.”

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

(Non) Free Will and Bioethics

May 01, 2017

by Bodnár János Kristóf, MA and PhD (Philosophy), Clarkson University MS (expected 2017, Research Ethics)

(Non)Free Will and Bioethics

Philosophers, religious thinkers, and laymen alike have pondered on the notion of ‘the freedom of the will’ for thousands of years. Over time, the concept underwent various transfigurations – through debates over the source, the function, the purpose, or the extent of it.  Nevertheless, in the so-called Western ethical tradition it seems to have a more or less unequivocal meaning: conscious adult individuals without particular mental illnesses are free in choosing their moral norms and actions. Consequently, they are responsible for those norms and actions as well. Humans meeting these criteria are commonly referred to as autonomous (literally: self-governing or self-determining)subjects.

In Immanuel Kant’s understanding of such autonomous agents, the freedom of the will is postulated. Less technically phrased, this freedom is taken ‘for granted’ as an unquestioned foundation and point of departure in ethics. This serves as a necessary condition of what Kant calls the ‘Kingdom of the Ends’ where humans can practice this freedom of theirs.

Our current liberal and democratic societies, formed in the eras of Modernity and Enlightenment, also grounded their most fundamental values – their ‘identity’ – on this notion, and incarnated this rather abstract ideal into tangible legal means: rights, constitutions, laws, and policies.

From the perspective of medicine and medical ethics, this turn is reflected in the fact that the principle of respect for the autonomous decision of the patient has become a (if not: the) cardinal value and practical concern in modern bioethics.

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

Perspectives in learning; Incorporating discussion materials and activities on ethics into science curriculum.

The Presidential Commission for the Study of Bioethical Issues has released over 60 educational resources that can be used as tools to teach students, researchers, clinicians, and other professionals to recognize and address ethical aspects of their work and understand how deliberation can inform ethical decision-making. These resources draw from the Bioethics Commission’s reports, and while all reports produced to date have been topic-specific, bioethics education and improving bioethics literacy has been a constant thread throughout the Bioethics Commission’s work.

The Commission’s most recent report, Bioethics for Every Generation, outlines a variety of models that can be used to teach ethics, and emphasizes that ethics education is about preparing students how to think ethically, rather than what to think. Bioethics for Every Generation also emphasizes that ethical questions and topics can be incorporated into existing courses, such as biology, chemistry, social studies and history courses, among others.

Frank Strona, the Bioethics Commission’s Senior Communications Analyst and Adjunct Faculty with National University’s Department of Health Sciences recently had an opportunity to sit down and interview Steven Kessler, Instructor of Biology and Microbiology at Santa Rosa Junior College in Petaluma, CA and former Visiting Fellow with the Bioethics Commission, discusses how incorporating bioethics into his science curriculum has affected his students and his work as a science educator.

FRANK STRONA: Tell us about how you have used bioethics to enhance traditional science education.

STEVEN KESSLER:  I incorporate bioethical issues into my traditional science classes in a number of ways.  The most satisfying way is to spend an entire class period delving deeply into one or two (if they are related) issues. 

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.