Tag: beneficence

Bioethics Blogs

“She Can’t Help The Choices She Makes”

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By Madeleine Cardona

I will never forget the day my mother got diagnosed. I could swear that just yesterday I was thirteen years old waiting anxiously to be called in from the waiting room of some fancy New York State doctor’s office. I was young, but I had some idea of what was going on. I knew my parents and I were there because they were going through a divorce and fighting for custody of me. What I did not know was that we were about to endure a court-ordered psychiatric evaluation and that the results were going to change my life forever.

“Madeleine, your mom is very sick,” the psychiatrist attempted to explain to me. I did not understand. I did not know a sick person could look perfectly healthy. “It’s not a physical sickness, it’s in her head. She has a mental disorder called Paranoid Schizophrenia.” She went on using big words to explain how my mother’s brain “wasn’t like other people’s brains.” I sat there listening closely, hanging on every word the woman was saying to me. “She can’t help the choices that she makes, it’s not her fault that she is the way that she is. She needs help.” Every day since that day in the doctor’s office, that remark replays in my head over and over. “She can’t help the choices she makes.”

That is what gave me the most trouble. I sat around for years and years watching the choices that my mother was making, unable to intervene.

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

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 News

Is There a Duty to Participate in Biospecimen Research?

July 6, 2017

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In an essay in the May-June 2017 Hastings Center Report, Holly Fernandez Lynch and Michelle N. Meyer assess the impact of the revised Common Rule on biospecimen research. They believe that the proposed “broad consent” approach – which involves participants agreeing to the storage of blood and other biological samples for subsequent use in a broad range of research projects –will rarely be used because of practical challenges in implementing it. In addition, they argue that ethical justifications are not robust enough to encourage researchers to use broad consent. To justify this claim, they write, “Many have argued that there is a duty based in justice and reciprocity to allow one’s biospecimens to be used in this way.” My concern is with the ethical calculus they describe and its use of the idea that people have a duty to participate in medical research.

Bioethicists debate whether there is a duty to participate and how it impacts ethical decision-making. Arguments for the duty to participate have been grounded in both beneficence and justice, but justice is the primary justification being offered here. The justice argument is that since everyone can benefit from medical research then everyone has an obligation to participate. This obligation is most often framed as a prima facie obligation—if no other duty or obligation conflicts, then one should participate in research. In many ways, biospecimen research is the perfect case for a duty to participate. It is a low-risk, potentially high-reward type of research, especially in the case of specimens remaining after a medical test or treatment.

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 News

Canada Today: End-of-Life Stories

In summary, this is a brief article consisting of multiple short stories. They particularly provide perspectives of patients in Canada who have faced end-of-life situations. Based on Catherine Porter’s article, there are various contextual motives behind these patients’ decisions to discontinue treatment or choose euthanasia. However, there is a common, general theme for such clinical practices. For example, a patient named June Vaile had been suffering from near-total blindness due to macular degeneration.

Subsequently, her learning of having colon cancer was a relief to her. Knowing this was an opportunity to attain medically-assisted suicide, Vaile sought this to end the misery associated with her inability to enjoy her life pursuits resulting from her former condition. Likewise, a patient named Eva McLeod was also diagnosed with cancer. Prior to such revelation, however, her mother had passed away. Already distraught, and fearing continued emotional pain from the onset, she viewed euthanasia as a palatable means to the end of suffering.

These two patients demonstrate that death is not always a immoral type of action in itself. The overall life circumstances of a patient may be too severe to warrant the continuation of a functional, healthy life. Therefore, death may be justified. This affirms the humanity through beneficence and non-maleficence in compliance with societal moral standards and our obligations to patients. Thus, patient narratives are very important. Such provides a personal, humanistic viewpoint to the identity that patients present in the clinical setting. Consequently, in the case of end-of-life situations, healthcare professionals are empowered to become more compassionate and prepared to serve the greater welfare of the patients and practices moving forward.

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

Appealing to the crowd: ethical justifications in Canadian medical crowdfunding campaigns

Guest Post: Jeremy Snyder
Paper:Appealing to the crowd: ethical justifications in Canadian medical crowdfunding campaigns

Medical crowdfunding is a practice where users take advantage of the power of social networks to raise funds related to medical needs from friends, family, and strangers by sharing fundraising appeals online. Popular venues include GiveForward, GoFundMe, and YouCaring, among others. This practice appears to be growing in terms of the number of active campaigns, the amount of money raised, and its visibility. An analysis of five crowdfunding sites found that in 2015 41% of all fundraising campaigns were for medical needs.

Medical crowdfunding has not received a great deal of scrutiny from ethicists or other academics. We are interested in a number of questions related to medical crowdfunding, including determining what reasons are given by campaigners for potential donors to contribute to their campaigns. In order to answer this question, we recorded and analyzed the language used in 80 medical crowdfunding campaigns, focusing on campaigns by Canadians.

We found that the reasons given for donating can be broken into three groups. First, campaigners used personal appeals to encourage giving, focusing their attention on friends and family members who already knew the recipient. This personal connection to the recipient was often framed as creating a reason to give, such as that “we should gather around them as one big family and help as much as possible.” These appeals can be linked to the ethics of care and relational ethics. Second, the depth of the recipient’s need and resulting positive impact of donations were framed as creating reasons to give.

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

How you’ll grow up, and how you’ll grow old

By Nathan Ahlgrim
Nathan Ahlgrim is a third year Ph.D. candidate in the Neuroscience Program at Emory. In his research, he studies how different brain regions interact to make certain memories stronger than others. In his own life, he strengthens his own brain power by hiking through the north Georgia mountains and reading highly technical science…fiction.

An ounce of prevention can only be worth a pound of cure if you know what to prevent in the first place. The solution to modifying disease onset can be fairly straightforward if the prevention techniques are rooted in lifestyle, such as maintaining a healthy diet and weight to prevent hypertension and type-II diabetes. However, disorders of the brain are more complicated – both to treat and to predict. The emerging science of preclinical detection of brain disorders was on display at Emory University during the April 28th symposium entitled, “The Use of Preclinical Biomarkers for Brain Diseases: A Neuroethical Dilemma.” Perspectives from ethicists, researchers conducting preclinical research, and participants or family members of those involved in clinical research were brought together over the course of the symposium. The diversity of panelists provided a holistic view of where preclinical research stands, and what must be considered as the field progresses.
Throughout the day, panelists discussed different ethical challenges of preclinical detection in the lens of three diseases: preclinical research and communicating risk in the context of Autism Spectrum Disorder (ASD), interventions and treatment of preclinical patients in the context of schizophrenia, and the delivery of a preclinical diagnosis and stigma in the context of Alzheimer’s disease.

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

Nudges in the ICU: When and How Should Intensivists Guide Surrogates’ Decisions?

Coming up next week at the ATS International Conference in Washington, DC: “Nudges in the ICU: When and How Should Intensivists Guide Surrogates’ Decisions?”


This 2-hour session will address the use of behavioral economics and “nudges” in the ICU to guide surrogate decision-making. In particular, it will explore methods for effectively deploying nudges—tools for clinicians to use in the ICU—and an ethical framework within which to do so that adequately balances autonomy and paternal beneficence.


At the conclusion of this session, the participant will be able to:

  • Discuss principles of behavioral economics (a.k.a. decision psychology) that physicians might employ to ethically and effectively guide end-of-life decision making in the ICU
  • Clarify misconceptions about the meaning and importance of patient autonomy and informed assent among ICU patients lacking decisional capacity
  • Discuss special considerations when deploying behavioral economics with pediatric patients and their parent surrogates

Behavioral Economics, Choice Architecture, and Nudges in the ICU
G.L. Anesi, MD, MBE, Philadelphia, PA


Intensivists’ Use of Informed Assent When Patients Lack Capacity
J.R. Curtis, MD, MPH, Seattle, WA


Default to DNR?
R.D. Stapleton, MD, PhD, Burlington, VT


Integrated ICU Team Communications and the Nursing Perspective
D.K. Costa, PhD, RN, Ann Arbor, MI


The (Ambiguous) Role of Autonomy in Surrogate
Decision-Making
D.B. White, MD, Pittsburgh, PA


Helping Parents with Decisions
M.F. Haward, MD, Bronx, NY

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

Nudges in the ICU: When and How Should Intensivists Guide Surrogates’ Decisions?

Coming up next week at the ATS International Conference in Washington, DC: “Nudges in the ICU: When and How Should Intensivists Guide Surrogates’ Decisions?”


This 2-hour session will address the use of behavioral economics and “nudges” in the ICU to guide surrogate decision-making. In particular, it will explore methods for effectively deploying nudges—tools for clinicians to use in the ICU—and an ethical framework within which to do so that adequately balances autonomy and paternal beneficence.


At the conclusion of this session, the participant will be able to:

  • Discuss principles of behavioral economics (a.k.a. decision psychology) that physicians might employ to ethically and effectively guide end-of-life decision making in the ICU
  • Clarify misconceptions about the meaning and importance of patient autonomy and informed assent among ICU patients lacking decisional capacity
  • Discuss special considerations when deploying behavioral economics with pediatric patients and their parent surrogates

Behavioral Economics, Choice Architecture, and Nudges in the ICU
G.L. Anesi, MD, MBE, Philadelphia, PA


Intensivists’ Use of Informed Assent When Patients Lack Capacity
J.R. Curtis, MD, MPH, Seattle, WA


Default to DNR?
R.D. Stapleton, MD, PhD, Burlington, VT


Integrated ICU Team Communications and the Nursing Perspective
D.K. Costa, PhD, RN, Ann Arbor, MI


The (Ambiguous) Role of Autonomy in Surrogate
Decision-Making
D.B. White, MD, Pittsburgh, PA


Helping Parents with Decisions
M.F. Haward, MD, Bronx, NY

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.