Tag: human dignity

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

Beauty’s Knowledge: Hawthorne’s Moral Fable “Rappaccini’s Daughter” by Leo Coleman

Nathaniel Hawthorne’s story “Rappaccini’s Daughter” is a nineteenth-century moral fable that sets the fruits of experimental knowledge against obligations to humanity, and stages a dramatic encounter between these two apparent goods. In many ways, the moral it offers seems familiar, and could be recognized by anyone with even a passing familiarity with contemporary bioethical debates. It features a mad scientist’s garden, a gorgeous but poisonous plant of his creation, and a lovely daughter who tends to his terrible plants, and who is—like the plant—both attractive and potentially infectious. The daughter receives the attentions of a naïve medical student, and she falls in love with him, but their fate is shadowed by the actions of not one but two bad scientist father-figures who experiment upon the younger characters and try to shape their (biological) destinies without their knowledge. But Hawthorne’s story does not simply anticipate, in an antique and allegorical way, contemporary defenses of human dignity and nature’s inviolability. Nor does it merely rehearse, with its private garden and unknowingly experimented-upon subjects, a Lockean notion of our own inevitable and natural possession of our bodies and the fruits of our lives and labor.

Hawthorne’s story puts the experimental subject at the center of its moral allegory, suffering both hopes and fears provoked by her own mutability, her own biological plasticity. That is, his titular character is no innocent pawn in the hands of the great scientist: she is an artificial being—grafted and forced—and deeply morally and biologically transformed from the very beginning; but because of this she is also able to reflect on her relations with others and her environment, and to mark (in this case, tragically) a new ethical frontier.

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

We Can and Must Rebuild the Bridges of Interdisciplinary Bioethics

by Darryl R. J. Macer

This editorial is made available on bioethics.net. The editorial along with the target article and open peer commentary is available via tandfonline.com

Although we can argue that bioethics is holistic and found in every culture, and still alive among people of many indigenous communities as well as the postmodern ones, the academic discipline of bioethics as interpreted by many scholars has attempted to burn bridges to both different views and to persons with different life trajectories and training. The bridges between different cultural and epistemological foundations of bioethics have also been strained by the dominance of Western paradigms of principlism and the emergence of an academic profession of medical bioethics.

This editorial reacts to the points made in the article by Lee, “A Bridge Back to the Future: Public Health Ethics, Bioethics, and Environmental Ethics.” This issue of the American Journal of Bioethics (AJOB) includes a number of commentaries on this theme, and challenges readers to reconsider the manner in which they conceive of bioethics, as well as the range of literature and scholars that they consider to as legitimate sources of wisdom. Such a new approach will not only breathe fresh light into the important work of all scholars, students, and teachers, but also offer some fresh references for contemporary policy changes that face us. Let us approach these issues like an ostrich who is taking her head out of the sand after some years of monodisciplinary focus. To be clear, Lee and some others writing here have apparently not had their head in the sand, as the interrelatedness of health and the environment is clear through the examples shared.

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

CHARLIE GARD: 37 European deputies stand against the European Court of Human Rights decision

In an open letter, 37 Eurodeputies support Charlie Gard and his parents and demand the respect of the right to live (see original letter signed at Strasbourg and titled, Charlie Gard must be given right to life, human dignity)

After the decision of the British Courts and of the European Court of Human Rights, the support provided by parenteral respiratory, nutrition and hydration assistance to Charlie Gard, the 10-months-old baby suffering from mitochondrial encephalopathy, can be suspended. This will lead to the certain death of the child. 37 European deputies[1]  have signed an open letter to express their “concern about the scandalous outcome of Charlie’s case, which violates the most fundamental European values, in particular, the right to live, the right to human dignity and to personal integrity”. In this case, they denounce “the approval of the successive courts to interrupt his supportive care, including nutrition and hydration”, ending with the European Court of Human Rights (ECHR), last recourse for Charlie Gard’s parents.

The European signatory deputies condemn a shameful behaviour which violates “the values of our civilised society” when a country “does not act in the best interest of its people”. They have committed themselves to oppose such practices with a firm “no”. (Genethiques informs you)

Eurodeputies stand against European Court of Human Rights names,

[1] The signatory deputies: Miroslav Mikolášik MEP, Luigi Morgano MEP, Laurentiu Rebega MEP, Laima Andrikiene MEP, Elisabetta Gardini MEP, Ivan Štefanec MEP, Lara Comi MEP, Marijana Petir MEP, Lorenzo Fontana MEP, Nicola Caputo MEP, Tunne Kelam MEP, Marek Jurek MEP, Beatrix von Storch MEP, Franc Bogovič MEP, Patricija Šulin MEP, Pavel Svoboda MEP, György Hölvenyi MEP, Michal Boni MEP, Jan Olbrycht MEP, Zbigniew Kuzmiuk MEP, Jadwiga Wiśniewska MEP, Thomas Mann MEP, Annie Schreijer-Pierik MEP, Daniela Aiuto MEP, Alojz Peterle MEP, Branislav Škripek MEP, Enrico Gasbarra MEP, Anna Záborská MEP, Arne Gericke MEP, Steven Woolfe MEP, Mylene Troszczynski MEP, Lars Adaktusson MEP, Remo Sernagiotto MEP, József Nagy MEP, Pál Csáky MEP Marek Plura MEP, Robert Jaroslaw Iwaszkiewicz MEP.

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

CHARLIE GARD: 37 European deputies stand against the European Court of Human Rights decision

In an open letter, 37 Eurodeputies support Charlie Gard and his parents and demand the respect of the right to live (see original letter signed at Strasbourg and titled, Charlie Gard must be given right to life, human dignity)

After the decision of the British Courts and of the European Court of Human Rights, the support provided by parenteral respiratory, nutrition and hydration assistance to Charlie Gard, the 10-months-old baby suffering from mitochondrial encephalopathy, can be suspended. This will lead to the certain death of the child. 37 European deputies[1]  have signed an open letter to express their “concern about the scandalous outcome of Charlie’s case, which violates the most fundamental European values, in particular, the right to live, the right to human dignity and to personal integrity”. In this case, they denounce “the approval of the successive courts to interrupt his supportive care, including nutrition and hydration”, ending with the European Court of Human Rights (ECHR), last recourse for Charlie Gard’s parents.

The European signatory deputies condemn a shameful behaviour which violates “the values of our civilised society” when a country “does not act in the best interest of its people”. They have committed themselves to oppose such practices with a firm “no”. (Genethiques informs you)

Eurodeputies stand against European Court of Human Rights names,

[1] The signatory deputies: Miroslav Mikolášik MEP, Luigi Morgano MEP, Laurentiu Rebega MEP, Laima Andrikiene MEP, Elisabetta Gardini MEP, Ivan Štefanec MEP, Lara Comi MEP, Marijana Petir MEP, Lorenzo Fontana MEP, Nicola Caputo MEP, Tunne Kelam MEP, Marek Jurek MEP, Beatrix von Storch MEP, Franc Bogovič MEP, Patricija Šulin MEP, Pavel Svoboda MEP, György Hölvenyi MEP, Michal Boni MEP, Jan Olbrycht MEP, Zbigniew Kuzmiuk MEP, Jadwiga Wiśniewska MEP, Thomas Mann MEP, Annie Schreijer-Pierik MEP, Daniela Aiuto MEP, Alojz Peterle MEP, Branislav Škripek MEP, Enrico Gasbarra MEP, Anna Záborská MEP, Arne Gericke MEP, Steven Woolfe MEP, Mylene Troszczynski MEP, Lars Adaktusson MEP, Remo Sernagiotto MEP, József Nagy MEP, Pál Csáky MEP Marek Plura MEP, Robert Jaroslaw Iwaszkiewicz MEP.

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

Rethinking the Belmont Report?

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 Ibrahim Garba, MA, JD, LLM, Elizabeth Hall-Lipsy, JD, MPH, Leila Barraza JD, MPH

Norms supporting ethical research have been part of international human rights law from the start. The Doctors Trial in 1947 convicting 23 Nazi physicians and officials accused of euthanasia and unethical medical experiments produced the Nuremburg Code. The Code became a blueprint for subsequent human subject protection frameworks, most notably the World Medical Association’s Ethical Principles for Medical Research Involving Human Subjects (i.e.,

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

Confronting Medicine in the Holocaust & Beyond

By Hedy S. Wald

Galilee, Israel, May 7-11, 2017. I was privileged to be at the Second International Scholars Workshop on “Medicine in the Holocaust and Beyond.” Why so meaningful?  Why so needed? 140 purposeful, passionate scholars from 17 countries delved into the past history of medicine at its worst in order to inform the future.  From 1933-1945, presumed healers within mainstream medicine (sworn to uphold the Hippocratic Oath) turned into killers (1).  Yes, medical ethics in Nazi-era medical school curricula existed, yet included “unequal worth of human beings, authoritative role of the physician, and priority of public health over individual-patient care”(2).  In Western Galilee College, (Akko), Bar-Ilan University Faculty of Health Sciences (Safed), and Galilee Medical Center and Ghetto Fighters’ Museum, (both in Nahariya), historians, physicians, nurses, medical and university educators, medical students, ethicists and more gathered to grapple with this history and consider how learning about medicine in the Holocaust can support healthy professional identity formation with a moral compass for navigating the future of medical practice with issues such as prejudice, assisted reproduction and suicide, resource allocation, obtaining valid informed consent, and challenges of genomics and technology expansion (3)…

The conference, in essence, served as a lens for the here and now, reinforcing my contention (and others’) that history of medicine in the Holocaust curricula including confronting the Nazi physicians’ and scientific establishment’s euthanasia of “lives unworthy of life,” forced sterilizations, horrific experimentation on their victims, and medicalized genocide (leading to the destruction of a third of the European Jewish population and many others) is a “moral imperative” in healthcare professions education (1,4).

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

Would You “Donate” Your Kidney for $1,000?

Crossposted from Rising to the Challenge, The Campaign for Johns Hopkins

 

Nearly 100,000 Americans sit on the waiting list for kidney donations, but only about 17,000 of the organs are transplanted each year — despite the fact that living donors can provide kidneys. What could help close the gap between the need and the supply? Might providing some kind of altruistic incentives or financial compensation for donors be a step toward saving thousands of lives, and with what ethical implications?

 

That thorny question is one of nine that Hopkins faculty are examining with Exploration of Practical Ethics grants administered by the Berman Institute of Bioethics. Established in part by a generous gift from university trustee Andreas Dracopoulos, the program funds one-year pilot studies that address key questions in professions and scholarly disciplines, within institutions, and throughout society.

 

“Research institutions like Hopkins are perfect for this kind of inquiry, because we don’t just produce graduates who can go out into the world and solve these problems. We produce the thought processes that inform the way future leaders will make decisions,” says Maria Merritt, an associate professor in the Berman Institute and Bloomberg School of Public Health. Merritt is overseeing the portfolio of funded awards in her role as program officer for the Exploration of Practical Ethics effort.

 

Vikram Chib and Mario Macis

 

Informing the debate over the ethics of payments for organ donation is the goal of a project proposed by Mario Macis, an associate professor in the Carey Business School, Vikram Chib, an associate professor in the Whiting School of Engineering, and Nicola Lacetera, an associate professor at the University of Toronto.

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

Taiwan grapples with the public health ethics of discouraging betel nut

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Betel nut, a mild stimulant often used by truck drivers, fishermen, and construction workers, stains the teeth and lips of Taiwanese who chew it. And it also leads to dire health consequences. Taiwan has the highest incidence of oral cancer in the world. Chewing betel nut is associated with a 28 times risk of oral cancer. If it is consumed along with alcohol and cigarettes, the risk rises to 122 times (compared to people who use none of them). There are other serious risks as well, including oesophageal cancer, coronary artery disease and stillbirths.

However, as an article in the Journal of Medical Ethics points out, the government of Taiwan is finding it difficult to curb its use, despite the huge health care costs. The areca palm from which it is harvested is easy to grow, profitable and popular. About 10% of the population chews betel nut, but 43% of indigenous people do. Sales amount to about US$3 billion a year.

The bioethicists argue that the government needs to campaign against betel nut with health information and innovative economic incentives. “From a utilitarian point of view, the financial burden of diseases caused by the betel nut greatly outweighs the potential benefits from the trade … Given the dire consequences, it is reasonable to argue that significant lowering of the incidence of betel nut chewing is in conformity with safeguarding human dignity and rights.”

However, there has been stiff resistance to anti-betel nut policies, as chewing is deeply embedded into the local culture.

This article is published by Michael Cook and BioEdge under a Creative Commons licence.

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

“Assisted Suicide: The Musical”

The Wall Street Journal’s weekend edition for March 4-5, 2017 carried a “Saturday interview” (subscription required) with one Liz Carr, the creator and, I gather, star of a stage production in London called “Assisted Suicide: The Musical.”  In the article, we read that it received a standing ovation from a full house, but the show’s website shows a one-night-only run.

The 46 year-old Ms. Carr is described as suffering from “a genetic disorder that prevents her from extending her muscles, among other impairments.”  She worries that the assisted suicide movement is benefiting from repeating “the right to die” like a “mantra.”  In the play, she plays a character called “Documentary Liz,” who, accompanied by “manipulative” music, is presented to the public as a pitiful character who really is trapped by life and would be better off dead.

Ms. Carr further comments that assisted suicide advocates hide behind two ideas: dignity—which is understood to depend on health, so that ill or disabled persons somehow lack it unless they end their lives—and self-determination, a term cruelly misused.  “Legalizing euthanasia doesn’t empower you,” she says.  “It empowers doctors.”  Her WSJ interviewer adds: “In the context of the modern welfare state, that means empowering agents of the government.”

She mocks the term used by assisted suicide proponents—“dignicide,” intended to denote death with dignity—as the denial of human dignity.

She argues that assisted suicide is not about autonomy, but about fear of death, something we don’t talk about any more in an irreligious society.  “I say this as an atheist,” she adds.

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.