Tag: knowledge

Bioethics News

A Lesson From the Henrietta Lacks Story: Science Needs Your Cells

It’s often portrayed as a story of exploitation. Henrietta Lacks, a poor, young African-American woman, learned she had terminal cancer. Cells collected from a biopsy of her cancer were cultured without her knowledge or permission to develop a cell line, called HeLa. Over the ensuing decades, research using HeLa cells led to scores of medical advances, saving lives — and making a lot of money for a lot of people, though not for Ms. Lacks’s family

Source: Bioethics Bulletin by the Berman Institute of 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

Research Matters: Diverse Voices Who Support the Value of Knowledge

In preparation for the March For Science (to be held in Washington, DC and other locations across the country on April 22), PLOS Pathogens Research Matters Editor Glenn Rall revisits the initial goal of the Research Matters series: an

Source: Speaking of Medicine, blog of the Public Library of Science.

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

New Cochrane Review of Patient Decision Aids

There is now yet another new Cochrane review of the evidence on patient decision aids.  Here are the conclusions:

  • When people use decision aids, they improve their knowledge of the options (high-quality evidence) and feel better informed and more clear about what matters most to them (high-quality evidence). 
  • They probably have more accurate expectations of benefits and harms of options (moderate-quality evidence) and probably participate more in decision making (moderate-quality evidence). 
  • People who use decision aids may achieve decisions that are consistent with their informed values (evidence is not as strong; more research could change results). 
  • People and their clinicians were more likely to talk about the decision when using a decision aid. 
  • Decision aids have a variable effect on the option chosen, depending on the choice being considered. 
  • Decision aids do not worsen health outcomes, and people using them are not less satisfied. 
  • More research is needed to assess if people continue with the option they chose and also to assess what impact decision aids have on healthcare systems.

Source: bioethics.net, a blog maintained by the editorial staff of The American Journal of 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

An Assessment of Mitochondrial Replacement Therapy

By: Alexa Woodward

Last year, a baby boy was born from an embryo that underwent mitochondrial replacement therapy (MRT). MRT was used to prevent this child from inheriting a mitochondrial disease from his mother, specifically infantile subacute necrotizing encephalomyelopathy – a disease that affects the central nervous system and usually results in death within the first few years of life. While controversial, assisted reproductive technologies (ARTs) such as MRT provide prospective parents with additional options and have the potential to improve the quality of human life by preventing disease.

This story is of bioethical interest because this technique results in germline modification, which is the alteration of DNA in the reproductive cells of humans that will be passed on to their offspring. Implementing MRT in humans has consequentially garnered much criticism, from simple health-related implications (such as unknown harms to potential offspring and eugenics concerns) to the futuristic next logical step of scientific intervention; directly editing the nuclear genome.

With MRT, modifications affect the mitochondrial genome (mtDNA), not the nuclear genome. Researchers emphasize the lack of bearing that mtDNA has on personal characteristics and the overall maintenance of “genetic integrity,” especially when compared to using the whole donor egg with an “unrelated” nuclear genome.1 Even so, additional concerns arise regarding the long-term anthropological effects, blurring the distinction between therapy and enhancement, and issues of resource allocation.

Mutations and deletions  in the mitochondrial genome can result in mitochondrial diseases affecting the neurological, musculoskeletal, cardiac, gastrointestinal, renal, and other systems, all of which are incurable.  MRT uses the intended parents’ nuclear DNA in conjunction with a donor’s mitochondria.

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

Would You Want to be a Savant?

By John Banja
John Banja, PhD is a medical ethicist at Emory University’s Center for Ethics, a professor in the Department of Rehabilitation Medicine, and the editor of AJOB Neuroscience.
Darold Treffert (2010), a psychiatrist who has devoted the better part of his career to studying savants, notes that there are at least 3 kinds.
First, those who manifest the “savant syndrome” and display the most astonishing of savant abilities, such as Kim Peek who was the inspiration for Dustin Hoffman’s character, Raymond Babbitt, in the movie Rain Man. Peek, who died from a heart attack in 2009, was remarkable even by savant standards: He memorized more than 12,000 books and was able to read two pages simultaneously, one page with the right eye, the other page with the left. He also had a remarkably hospitable form of dyslexia where he could read words on a page turned sideways or upside down or backwards—such as reflected in a mirror. He could add a column of numbers from a telephone book page and instantly tell you the mean of those numbers, and he could do lightning calendar calculations like telling you which day of the week you were born upon knowing your birth date (Treffert, 2010, pp. 120-129). These were only a few of his talents. 

I might also mention Daniel Tammet who, on March 14th, 2004 on “International Pi Day”—get it?: 3.14—recited from memory Pi to 22,514 decimal places (p. 161). Or George Widener who can tell you what day of the week June 25th will be in the year 47,253 (p.

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

Clinical Research Ethics Question of the Month: April 2017

This month’s question places you in the FDA commissioner’s seat:

You are the Commissioner of the FDA. A friend has informed you of the following situation: Over 1,000 people with severe, refractive emphysema have banded together to test a drug that is approved for asthma but not emphysema. Participants “drew straws” to determine which of them would ask their physicians for a prescription. While the FDA has no authority over the practice of medicine, it does have authority over clinical studies that create generalizable knowledge.

The post Clinical Research Ethics Question of the Month: April 2017 appeared first on Ampersand.

Source: Ampersand, the blog of PRIM&R.

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

Rape, disability, and gender: A response to McMahan and Singer’s op-ed on the Anna Stubblefield case

Unfortunately, there have been numerous cases of sexual
harassment and sexual assault in academia and particularly in more
male-dominated fields, including my home field of philosophy. In these cases,
professors use their position of prestige and power to sexually harass and
abuse their students. UC Berkeley philosophy professor John
Searle
is just the most recent example. To my knowledge, all of these cases
have involved male professors victimizing female students. The lone exception
is Anna
Stubblefield
, a former professor of philosophy at Rutgers. Here is a
summary of her case from Current Affairs

At issue is the case of Anna
Stubblefield, a Rutgers University philosophy professor convicted of sexually
assaulting her mentally disabled pupil, and sentenced to 12 years in prison.
The case is, to say the least, extremely unusual. The student, D.J., was a
severely impaired 30 year old man with cerebal palsy, who had never spoken a
word in his life and communicated through “screams” and “chirps.” Stubblefield
acted as his personal tutor, using a discredited pseudoscientific technique to
elicit what she insisted were complex communications from D.J. Eventually,
based on what she believed D.J. wanted, Stubblefield began engaging in sex acts
with him, having become romantically attracted to him over the course of her
time assisting him.  

Stubblefield’s case is not only different because she is a
woman and her victim is a man, but also because she is one of the few
professors to go through the legal system and be convicted.

There are
many complexities to Stubblefield’s case and I don’t have the space to address
them all here.

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 ethnographic case: series conclusion by Emily Yates-Doerr

Editors note: This entry concludes the series “The Ethnographic Case” which ran every other Monday between June 2015 and July 2016. The bookCase, which holds 27 cases, can be accessed here.

One day, early on in the series, we received two submissions. Their similar anatomy was striking. Each featured a medical waiting room. Someone entered the space with a gift for the clinical personnel, the gift was accepted, and something shifted in the resulting care.

In Aaron Ansell’s case, set within gardens of an informal clinic in Piauí, Brazil, the gift was a small satchel of milk. Rima Praspaliauskiene’s was set in a Lithuanian public hospital and the gift was a rich chocolate cake. Aaron, who works and teaches on legal orders, analyzed the exchange as a challenge to hospital norms of equalitarianism. He helped us to see how the give-and-take of milk interrupts the requirements of a deracinated liberal democracy, offering instead the warm sociality of personal affinity. Rima, who focuses on medical care and valuing, used the object of the cake to query the social scientist’s impulse to explain why people do what they do. She shows us how this impulse may rest upon the linearity and equivalence of rational calculation, uncomfortably treating sociality as a commodity.

The juxtaposition of these submissions is emblematic – a case, if you will – of something we have seen throughout this series: the art of ethnographic writing resides in a relation between what is there and what is done with it.

Beginnings

We might trace the origin of the series to a business meeting at the AAAs, when we offered the idea of “the ethnographic case” for a Somatosphere series.

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

Expert Advisory Committees & Conflict of Interest

Jean-Christophe Bélisle-Pipon, Louise Ringuette, and Bryn Williams-Jones describe a five-step approach for managing conflicts of interest in public health decision-making.

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On a regular basis, shocking news filters into the media about conflicts of interest within public organizations that contribute to policy-making. When such allegations are proven true, public scepticism about whether public interests or commercial interests inform policy-making increases.

Public health decision-making, especially in areas of complex science, is generally supported by expert advice. One such area is publicly-funded immunization. In Canada, the National Advisory Committee on Immunization is an advisory body to the Public Health Agency of Canada, while the provinces and territories rely on advice from local expert advisory committees.

Members of immunization expert advisory committees have an important role to play in guiding public health decision-making, particularly with regard to the selection of vaccines and the scheduling of immunizations. Given this important role, independence and transparency are expected. One mechanism for promoting independence is a robust, publicly available conflict of interest policy.

We suggest a simple five-step approach for better managing conflicts of interest.

First, ask the right questions and identify red flags. What are the interests at stake and for whom?

For example, consider situations where one or more committee members receive(s) significant funding from industry. Are there external interests, as a result of this funding, that may influence the committee’s mandate and activities? This concern applies to private companies with products or business activities related to immunization, or with connections to certain advocacy or interest groups.

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 Lesson in Humanism to Medical Students Prompted by a Mass Casualty Event

by Sergio Salazar, MD, MBE

The purpose of this editorial is to reveal how one of the most tragic events in our nation’s history helped teach future medical providers the influence that humanistic actions can have on relieving suffering and forward healing.

On June 12, 2016 the largest mass shooting incident in our nation’s history claimed the lives of forty-nine innocent victims at the Pulse night club in Orlando. The Pulse night club was frequented by the Latino LGBTQ community. The shooter was identified as a terrorist with extremist religious beliefs adding intolerance for alternative lifestyles and race to the massive loss of life.    Due to the emotional turmoil experienced by everyone in the community, a session was prepared to provide a platform for discussion and closure for our students. Some students had been directly or indirectly involved in the care of the victims. The majority were like the rest of us, bystanders trying to come to grips with the senseless loss of life.

The longitudinal curricular themes (LCT) at the University Of Central Florida College Of Medicine include Ethics and Humanities. As with other aspects of medicine, learning becomes enhanced when the context of a lesson is presented as a real life scenario. After the mass casualty event known as the “Pulse” event, it was evident to everyone that the student body needed the opportunity to express their feeling regarding this tragedy.  To meet this need, the faculty devoted one of the ethics and humanities LCT sessions to facilitate discussion using an expert panel format.

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.