Tag: consent

Bioethics Blogs

Functional neo-Aristotelianism as a way to preserve moral agency: A response to Dr William Casebeer’s lecture: The Neuroscience of Moral Agency

Source: Practical Ethics, ethics in the news blog by University of Oxford.

Excerpt:

Written by Dr Anibal Monasterio Astobiza

Audio File of Dr Casebeer’s talk is available here: http://media.philosophy.ox.ac.uk/uehiro/HT17_Casebeer.mp3

 

Dr. William Casebeer has an unusual, but nonetheless very interesting, professional career. He retired from active duty as a US Air Force Lieutenant Colonel and intelligence analyst. He obtained his PhD in Cognitive Science and Philosophy from University of California, San Diego, under the guidance and inspiration of Patricia and Paul Churchland, served as a Program Manager at the Defense Advanced Research Projects Agency from 2010-14 in the Defense Sciences Office and helped to established DARPA’s neuroethics program. Nowadays, Dr. William Casebeer is a Research Area Manager in Human Systems and Autonomy for Lockheed Martin’s Advanced Technology Laboratories. As I said, not the conventional path for a well known researcher with very prominent contributions in neuroethics and moral evolution. His book Natural Ethical Facts: Evolution, Connectionism, and Moral Cognition (MIT Press) presented a functional and neo-Aristotelian account of morality with a clever argument trying to solve G. E. Moore´s naturalistic fallacy: according to Casebeer it is possible to reduce what is good, or in other words morality, to natural facts.

In his public lecture of 14 February 2017, held at the Lecture Theatre, Oxford Martin School, Oxford, entitled “The Neuroscience of Moral Agency (Or: How I Learned to Love Determinism and Still Respect Myself in the Morning”, Dr. William Casebeer resubmitted the case for a functional neo-Aristotelianism  model for agency that defends a compatibilist view of free will: to accept determinism as viable but still hold moral concepts true.

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

Memories Shouldn’t Last a Megabyte

By: Shari Esquenazi

Imagine a world where you can take a picture of anything you desire with just your eyes. You can keep these images stored forever on a wireless device, immediately and infinitely retrievable.  Sounds great, right?

Recent scientific advancements have made contact lenses that are embedded with small cameras a reality. Such forthcoming technologies tend to bring an abundance of ethical considerations with them. 

Google’s “Glass” was the first step toward eyewear that can record photos and video. The tech giant applied for a patent for a contact lens camera in 2014.  Last year, Sony filed a similar patent for a contact lens-embedded camera. While these contacts have a variety of practical uses which both benefit individuals and the overall society, they are not without their faults.

This technology would be undeniably valuable in innumerable situations. A witness to a crime could take a photo that defends the word of a victim, trimming down court cases and protecting innocent citizens in society. A surgeon who finds herself in a problematic operation could live stream the images to another specialist for advice on how to quickly and safely remedy the situation and save a life. 

While the technology has unparalleled benefits, there are ethical concerns that need to be deeply weighed before a person opts for such a capacity in day-to-day life. A brief bioethical analysis illustrates these concerns. 

The existential and ethical theory of transhumanism is the belief that the human race can evolve beyond its current physical and mental limitations, particularly by means of science and technology.

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

Regenerative Medicine: The Promise and Peril

Caption: Scanning electron micrograph of iPSC-derived retinal pigment epithelial cells growing on a nanofiber scaffold (blue).
Credit: Sheldon Miller, Arvydas Maminishkis, Robert Fariss, and Kapil Bharti, National Eye Institute/NIH

Stem cells derived from a person’s own body have the potential to replace tissue damaged by a wide array of diseases. Now, two reports published in the New England Journal of Medicine highlight the promise—and the peril—of this rapidly advancing area of regenerative medicine. Both groups took aim at the same disorder: age-related macular degeneration (AMD), a common, progressive form of vision loss. Unfortunately for several patients, the results couldn’t have been more different.

In the first case, researchers in Japan took cells from the skin of a female volunteer with AMD and used them to create induced pluripotent stem cells (iPSCs) in the lab. Those iPSCs were coaxed into differentiating into cells that closely resemble those found near the macula, a tiny area in the center of the eye’s retina that is damaged in AMD. The lab-grown tissue, made of retinal pigment epithelial cells, was then transplanted into one of the woman’s eyes. While there was hope that there might be actual visual improvement, the main goal of this first in human clinical research project was to assess safety. The patient’s vision remained stable in the treated eye, no adverse events occurred, and the transplanted cells remained viable for more than a year.

Exciting stuff, but, as the second report shows, it is imperative that all human tests of regenerative approaches be designed and carried out with the utmost care and scientific rigor.

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

Euthanasia & Organ Donation in Canada

National Post reports that since Canada decriminalized euthanasia in June 2016, 26 of the 338 patients who have died by lethal injection in Ontario chose to donate tissue or organs.  Lethal injection, which causes cardiac death in two or three minutes, allows organs to be removed much more quickly than after natural death, which results in better organs for transplants.  Organ retrieval after euthanasia is thus an attractive prospect for some physicians.

Once one accepts the premise of euthanasia, it is easy to justify harvesting organs from consenting patients.  As Dr. James Downar argues, “If we accept people can make decisions to end life, and we accept the idea of cardiac death being sufficient for organ donation, this should be acceptable.”

However, even some proponents of euthanasia are uncomfortable with the idea, voicing concern that the opportunity to help others might pressure some to end their lives.  Others point out that it would be very difficult for a patient to change his or her mind after the process of the donation has been started and recipients for the organs have been found.

As this article demonstrates, accepting the morality of euthanasia makes it increasingly difficult to explain why other medical practices should be off-limits.  Questions of autonomy, consent, and coercion become harder to navigate once the basic moral principle that physicians should not kill is overturned. Indeed, it is not a long logical step from retrieving organs after lethal injection to harvesting before cardiac death.

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

Bioethics & Wine

I
never thought I’d have the opportunity to use this blog title. Never, that is,
until I stumbled across a company called
Vinome, a California
start-up that offers a curated wine service based on a customer’s individual
taste profile. What makes this wine subscription service unique is not its
price (although, at around
$65 a bottle, it’s just a
bit outside of the typical price-per-bottle for many wine club members). At
Vinome, your taste profile includes not only a list of questions about your
preferences, but also information from DNA sequencing from the saliva sample
you provide to the company. The company website proclaims this is “A little
science and a lot of fun,” but
experts are skeptical about whether
there is any science involved at all.

Holding
aside the question of scientific plausibility, companies touting
direct-to-consumer genetic screening for ancestry, medical issues, or just
plain fun include information in the fine print that would give any bioethicist
pause. While the Vinome website requires patrons to check the box indicating “I
have read and understand the Vinome Informed Consent” prior to ordering, that “informed
consent” is only available if the customer
voluntarily
clicks on the informed consent link. Buried at the bottom of the informed
consent screen is a sentence that reads:

 

“You allow
Vinome to retain your data as part of Vinome’s secure research database, for
use by Vinome or its research affiliates, in an effort to improve and expand
services. If any commercial product is developed as a result of the use of your
data, there will be no financial benefit to you.”

 

In
case the business interests are still unclear, here is more from their Terms of
Service:

 

“By submitting
DNA to Vinome, you grant Vinome a perpetual, royalty-free, world-wide,
transferable license to use your de-identified DNA, and to use, host,
sublicense and distribute the anonymous resulting analysis to the extent and in
the form or context we deem appropriate on or through any media or medium and
with any technology or devices now known or hereafter developed or discovered.”

 

That’s
quite a sweeping consent, and one of which I suspect most customers will never be
aware.

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

Bioethics & Wine

I
never thought I’d have the opportunity to use this blog title. Never, that is,
until I stumbled across a company called
Vinome, a California
start-up that offers a curated wine service based on a customer’s individual
taste profile. What makes this wine subscription service unique is not its
price (although, at around
$65 a bottle, it’s just a
bit outside of the typical price-per-bottle for many wine club members). At
Vinome, your taste profile includes not only a list of questions about your
preferences, but also information from DNA sequencing from the saliva sample
you provide to the company. The company website proclaims this is “A little
science and a lot of fun,” but
experts are skeptical about whether
there is any science involved at all.

Holding
aside the question of scientific plausibility, companies touting
direct-to-consumer genetic screening for ancestry, medical issues, or just
plain fun include information in the fine print that would give any bioethicist
pause. While the Vinome website requires patrons to check the box indicating “I
have read and understand the Vinome Informed Consent” prior to ordering, that “informed
consent” is only available if the customer
voluntarily
clicks on the informed consent link. Buried at the bottom of the informed
consent screen is a sentence that reads:

 

“You allow
Vinome to retain your data as part of Vinome’s secure research database, for
use by Vinome or its research affiliates, in an effort to improve and expand
services. If any commercial product is developed as a result of the use of your
data, there will be no financial benefit to you.”

 

In
case the business interests are still unclear, here is more from their Terms of
Service:

 

“By submitting
DNA to Vinome, you grant Vinome a perpetual, royalty-free, world-wide,
transferable license to use your de-identified DNA, and to use, host,
sublicense and distribute the anonymous resulting analysis to the extent and in
the form or context we deem appropriate on or through any media or medium and
with any technology or devices now known or hereafter developed or discovered.”

 

That’s
quite a sweeping consent, and one of which I suspect most customers will never be
aware.

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

Consent based on trust rather than information?

Consent to research participation has two dimensions. On the one hand, the researcher wants to do something with the participant: we don’t know what until the researcher tells. To obtain consent, the researcher must provide information about what will be done, what the purpose is, what the risks and benefits are – so that potential participants can decide whether to consent or not.

On the other hand, potential participants would hardly believe the information and consider consenting, if they didn’t trust the researcher or the research institution. If trust is strong, they might consent even without considering the information. Presumably, this occurs often.

The fact that consent can be given based on trust has led to a discussion of trust-based consent as more or less a separate form of consent, next to informed consent. An article in the journal Bioethics, for example, argues that consent based on trust is not morally inferior to consent based on information. Consent based on trust supports autonomy, voluntariness, non-manipulation and non-exploitation as much as consent based on information does, the authors argue.

I think it is important to highlight trust as a dimension of consent to research participation. Consent based on trust need not be morally inferior to consent based on careful study of information.

However, I get puzzled over the tendency to speak of trust-based consent as almost a separate form of consent, next to informed consent. That researchers consider ethical aspects of planned research and tell about them seems to be a concrete way of manifesting responsibility, respect and trustworthiness.

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

Pornography as a Public Health Issue

Jacqueline Gahagan advocates for a national sexual health promotion strategy.

__________________________________________

Pornography is concerned with the development and the circulation of sexually explicit books, magazines, videos, art, and music aimed at creating sexual excitement. Public health is concerned with keeping people healthy and preventing illness, injury and premature death. With the growing use of internet-based pornography and the relative ease by which it can be accessed, the effects of “online violent and degrading sexually explicit material on children, women and men” have become an important public health issue. This issue is best addressed through the development and introduction of a national sexual health promotion strategy – a strategy that includes current and comprehensive sexual health education in our primary, secondary, and post-secondary schools.

Health promotion, in concert with public health, involves encouraging safe behaviours and improving health through healthy public policy, community-based interventions, active public participation, advocacy, and action on key determinants of health. I am confident that several of these strategies can be used to address concerns about the ready access to internet-based pornography. For example, health promotion initiatives that take a harm reduction approach to healthy sexuality include an emphasis on screening and testing for sexually transmitted infections, the use of condoms, a shared understanding of consensual sex, as well as the use of other safer sex interventions.

A review of existing sexual health education in Canadian schools, however, reveals that many Canadian youth do not receive the level of sexual health education they need to help them make informed decisions about sexual risk-taking.

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

Charlie Gard – Court Gives Parents More Time in Medical Futility Conflict

In contrast to courts in the USA, courts in the UK have provided substantial guidance in medical futility conflicts.  One of the most recent of these cases involves seven-month-old Charlie Gard.  He has a mitochondrial depletion syndrome for which there is no cure.  

Clinicians at Great Ormond Street Hospital determined that continued life-sustaining treatment was inappropriate.  But Charlie’s parents would not consent.  So, clinicians asked the court for permission to stop.  They had both a detailed benefit/burden table and the concurrence of a second hospital. 

The court has given the parents time to try to raise money for a transfer to the United States for an experimental therapy.  

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

Marwa Bouchenafa – French Court Orders Clinicians to Treat Baby over Their Objections

Marwa Bouchenafa was born in November 2015. Last September, she
suffered a severe viral infection that resulted in neurological damage,
paralyzed limbs, and dependence on mechanical ventilation.

In November 2016, the hospital determined that further treatment was
inappropriate.  Unable to obtain parental consent, the hospital invoked French
Public Health Code 
Article
L1110-5
.  It provides that “acts of medical care should not
be pursued with unreasonable obstinacy. When they appear to be of no use,
disproportionate, or having no other effect than artificial maintenance of
life, they can be suspended or not be undertaken.”



But the hospital was unable to establish that Marwa’s case met these standards.
While the local court in Marseille agreed, in February 2017, that Marwa had an
extremely negative prognosis, it disagreed that her treatment met the
conditions for therapeutic obstinacy.


The hospital appealed to the Council of State (Le Conseil d’Etat), the forum of
last resort in France.  In March 2017, that court
 affirmed.
 It based its decision primarily on the ground that there is still some
uncertainty about Marwa’s prognosis and prospects for improvement.

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.