Tag: research

Bioethics Blogs

Happy 15th Birthday, Neuroethics!

[This post first appeared in the Neuroethics Blog on May 13, 2017: http://www.theneuroethicsblog.com/2017/05/happy-15th-birthday-neuroethics.html]

Fifteen years ago, on May 13, 2002, a two-day conference called “Neuroethics: Mapping the Field” began at the Presidio in San Francisco. And modern neuroethics was born. That conference was the first meeting to bring together a wide range of people who were, or would soon be, writing in “neuroethics;” it gave the new field substantial publicity; and, perhaps most importantly, it gave it a catchy name.


That birthdate could, of course, be debated. In his introduction to the proceedings of that conference, William Safire, a long-time columnist for the NEW YORK TIMES (among other things), gave neuroethics a longer history:

The first conference or meeting on this general subject was held back in the summer of 1816 in a cottage on Lake Geneva. Present were a couple of world-class poets, their mistresses, and their doctor. (Marcus)

Safire referred to the summer holiday of Lord Byron and Percy Bysshe Shelley; Byron’s sometime mistress, Claire Clairmont; and Shelley’s then-mistress, later wife, known at the time as Mary Godwin and now remembered as Mary Wollstonecraft Shelley. The historically cold and wet summer of 1816 (“the year without a summer”) led them to try writing ghost stories. Godwin succeeded brilliantly; her story eventually was published in 1818 as FRANKENSTEIN: OR, THE NEW PROMETHEUS.

Camillo Golgi, image courtesy of
Wikipedia.
Safire’s arresting opening gives neuroethics either too little history or too much. If, like Safire, one allows neuroethics to predate an understanding of the importance of the brain, early human literature – both religious and secular – show a keen interest in human desires and motivations.

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

Public Perception and Communication of Scientific Uncertainty

Scientific results are inherently uncertain. The public views uncertainty differently than scientists. One key to understanding when and how scientific research gets misinterpreted is to understand how the public thinks about scientific uncertainty.

A recent paper in the Journal of Experimental Psychology: General explores how laypersons perceive uncertainty in science. Broomell and Kane use principle component analysis to discover three underlying dimensions that describe how the public characterizes uncertainty: precision, mathematical abstraction, and temporal distance. These three dimensions, in turn, predict how people rate the quality of a research field. Precision – loosely defined in this context as the accuracy of the measurements, predictions, and conclusions drawn within a research field – is the dominating factor. One interpretation is that the public is primarily concerned with definitiveness when evaluating scientific claims.

Members of the public lose confidence when fields of study are described as being more uncertain. This is relevant for scientists to consider when communicating results. On the one hand, over-selling the certainty of an outcome can mislead. On the other hand, the public might tend to dismiss important scientific findings when researchers describe uncertainty honestly and openly, as we have seen in the public denial of vaccinations and climate change. Perceptions of a research field do not seem to influence how people view individual studies, so each study should be treated as its own communique.

Broomell et al found some evidence that personal characteristics interpret scientific uncertainty in different ways. Self-identified Republicans are more concerned about expert disagreement, while self-identified Democrats are more concerned with the quality of evidence.

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

Revisiting What to Call People Who Participate in Clinical Research

In early 2014, PRIM&R explored the topic of what we call individuals who volunteer for research in a post titled “What’s in a name? Research ‘participant’ versus research ‘subject’.” In this post, PRIM&R concludes that, on the whole, “subject” is the most appropriate title for those involved in research studies (recognizing, however, that in some instances “participant ” may be appropriate; for example, in community-based participatory and participant-led research). Herein we present the contrasting points of view of three individuals.

The post Revisiting What to Call People Who Participate in Clinical Research 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 News

Users’ Guide to Integrating Patient-Reported Outcomes in Electronic Health Records

This Users’ Guide facilitates integration of patient-reported outcomes in the electronic health record, enabling use of PRO data for multiple clinical, research, and administrative applications, and thereby promoting patient-centered care. Authors include our Joe Ali

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

Snapshots of Life: Fighting Urinary Tract Infections

Source: Valerie O’Brien, Matthew Joens, Scott J. Hultgren, James A.J. Fitzpatrick, Washington University, St. Louis

For patients who’ve succeeded in knocking out a bad urinary tract infection (UTI) with antibiotic treatment, it’s frustrating to have that uncomfortable burning sensation flare back up. Researchers are hopeful that this striking work of science and art can help them better understand why severe UTIs leave people at greater risk of subsequent infection, as well as find ways to stop the vicious cycle.

Here you see the bladder (blue) of a laboratory mouse that was re-infected 24 hours earlier with the bacterium Escherichia coli (pink), a common cause of UTIs. White blood cells (yellow) reach out with what appear to be stringy extracellular traps to immobilize and kill the bacteria.

Valerie O’Brien, a graduate student in Scott Hultgren’s lab at Washington University, St. Louis, snapped this battle of microbes and white blood cells using a scanning electron microscope and then colorized it to draw out the striking details. It was one of the winners in the Federation of American Societies for Experimental Biology’s 2016 BioArt competition.

As reported last year in Nature Microbiology, O’Brien and her colleagues have evidence that severe UTIs leave a lasting imprint on bladder tissue [1]. That includes structural changes to the bladder wall and modifications in the gene activity of the cells that line its surface. The researchers suspect that a recurrent infection “hotwires” the bladder to rev up production of the enzyme Cox2 and enter an inflammatory state that makes living conditions even more hospitable for bacteria to grow and flourish.

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

Ten years since the discovery of iPS cells. The current state of their clinical application

Photo Neurons derived from human iPS cells Stem Cells Australia

Background

Few biomedical discoveries in recent decades have raised so many expectations as the achievement of adult reprogrammed cells or induced pluripotent stem (iPS) cells.1

Pluripotent cells are obtained from adult cells from various tissues that, after genetic reprogramming, can dedifferentiate to a pluripotency state similar to that of embryonic cells, which allows for subsequent differentiation into different cell strains.2,3

In our opinion, this discovery is relevant not only to biomedical issues but also to ethical ones, given that iPS cells could replace human embryonic stem cells (see HERE) – whose use raises numerous ethical problems – in biomedical experimentation and in clinical practice. However, after the last 10 years, the use of iPS cells has still not been clarified. A number of expectations have been met, but other mainly clinical expectations are still far from being achieved.

Current research limitations with iPS cells

There is a notable low efficacy in the techniques employed for obtaining a sufficient proportion of iPS cells, which represents a difficulty in its clinical application.4  Another limitation is the incomplete reprogramming, which depends on the type of cell employed,5 and the problems of mutagenesis resulting from inserting exogenous transcription-factor coding genes, which can cause tumors in the employed cells used.6 Recent studies aim to mitigate this effect.7 A clinical trial for treating macular degeneration with retinal pigment epithelium cells derived from autologously obtained iPS cells has recently been halted.8 After an initially successful experience with the first treated patient, the genetic sequencing of the iPS cells obtained from the second patient revealed mutations in 3 different genes, one of which was classified as oncogene in the Catalogue of Somatic Mutations in Cancer.

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 Backup Plan for Solo Seniors: Health Care Decision Making for People Aging Alone

Check out this free webinar by Linda J. Camp on June 12: “A Backup Plan for Solo Seniors: Health Care Decision Making for People Aging Alone.”  


Talking about the last life chapters isn’t easy for anyone, but it is especially difficult for “solos;” older adults who lack the traditional family support structure.  When crafting wills, trusts, Powers of Attorney and Advance Care Directives, members of this group struggle with who to designate as a surrogate. Solos “with capacity,” are a largely invisible but growing group.  Come hear about and discuss the foundational work on this issue that is underway in Minnesota.


Objectives:

  • Gain awareness and understanding of the diverse personal circumstances and diverse perspectives of solo older adults
  • Explore the unique issues, needs, gaps, and barriers faced by solos in planning for late-life
  • Learn about replicable work in Minnesota directed toward implementing practical solutions for solos
  • Discuss opportunities to contribute to current research

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

A Backup Plan for Solo Seniors: Health Care Decision Making for People Aging Alone

Check out this free webinar by Linda J. Camp on June 12: “A Backup Plan for Solo Seniors: Health Care Decision Making for People Aging Alone.”  


Talking about the last life chapters isn’t easy for anyone, but it is especially difficult for “solos;” older adults who lack the traditional family support structure.  When crafting wills, trusts, Powers of Attorney and Advance Care Directives, members of this group struggle with who to designate as a surrogate. Solos “with capacity,” are a largely invisible but growing group.  Come hear about and discuss the foundational work on this issue that is underway in Minnesota.


Objectives:

  • Gain awareness and understanding of the diverse personal circumstances and diverse perspectives of solo older adults
  • Explore the unique issues, needs, gaps, and barriers faced by solos in planning for late-life
  • Learn about replicable work in Minnesota directed toward implementing practical solutions for solos
  • Discuss opportunities to contribute to current research

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

Interview with Arthur Caplan

by Kaitlynd Hiller and Rachel F. Bloom

It is a difficult task to succinctly describe the professional accomplishments of Arthur Caplan, PhD. For the uninitiated, Dr. Caplan is perhaps the most prominent voice in the conversation between bioethicists and the general public, as well as being a prolific writer and academic. He is currently the Drs. William F. and Virginia Connolly Mitty Professor of Bioethics at NYU Langone Medical Center and NYU School of Medicine, having founded the Division of Bioethics there in 2012. Additionally, he co-founded the NYU Sports and Society Program, where he currently serves as Dean, and heads the ethics program for NYU’s Global Institute for Public Health. Prior to joining NYU, he created the Center for Bioethics and Department of Medical Ethics at the University of Pennsylvania Perelman School of Medicine, serving as the Sidney D. Caplan Professor of Bioethics. Dr. Caplan is a Hastings Center fellow, also holding fellowships at The New York Academy of Medicine, the College of Physicians of Philadelphia, the American Association for the Advancement of Science, and the American College of Legal Medicine. He received the lifetime achievement award of the American Society of Bioethics and Humanities in 2016.

Dr. Caplan’s experience is not at all limited to the academic realm: he has served on numerous advisory counsels at the national and international level, and is an ethics advisor for organizations tackling issues from synthetic biology to world health to compassionate care. Dr. Caplan has been awarded the McGovern Medal of the American Medical Writers Association, the Franklin Award from the City of Philadelphia, the Patricia Price Browne Prize in Biomedical Ethics, the Public Service Award from the National Science Foundation, and the Rare Impact Award from the National Organization for Rare Disorders; he also holds seven honorary degrees.

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

Decades on from Henrietta Lacks, we’re still struggling to find an adequate consent model

The ‘immortal’ HeLa cells. Heiti Paves/Shutterstock

When 30-year-old Henrietta Lacks walked through the doors of a Baltimore hospital in 1951 to get a “knot in the stomach” checked, she couldn’t have known she was about to change the face of medical research.

After undergoing a biopsy on her “knot”, Lacks was diagnosed with cervical cancer; it was so aggressive that she died only a few months later.

Henrietta Lacks.
Oregon State University/Flickr., CC BY-SA

But that was not the end of Lacks’s “life”. A small part of the cervical biopsy was retained and conveyed to the hospital’s tissue culture laboratory. There Dr George Gey, head of the laboratory, had been working for a few years on a system whereby human cells would continuously divide and grow in culture dishes. Gey had had no success thus far, but when he placed Lacks’s cells in culture, they behaved very differently.

Lacks’s cells survived, multiplied, grew robustly, and continued to do so for weeks and months afterwards – subsequently generating the first immortalised human cell line.

Gey never made a profit from these “HeLa” cells – named after Henrietta Lacks – but did distribute them to other scientists. Since then, the HeLa cells have been grown in countless laboratories across the globe and have now lived for twice as long outside Lacks’s body as they did inside it.

HeLa cells have revolutionised medical research, made countless contributions to medicine – from vaccine production to fertility treatment – and have been the foundation of a multi-billion dollar industry.

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.