Tag: research

Bioethics Blogs

Psychiatric Genetics in a Risk Society

by Nicole Martinez-Martin

Kong and colleagues raise substantive areas of ethical concern regarding the translation of psychiatric genetic research into clinical and public health contexts. They recognize that psychiatric genomic research itself does not support essentialist claims, but point out that, nonetheless, the translation of genetic research to these new contexts may reinforce essentialist views of mental illness. Underlying Kong and colleagues’ analysis is recognition of the ways in which certain epistemological orientations, embedded within culture and institutional practices, may shape the translation of genetic 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 News

South Africa to Try Japanese Drug Against Resistant Form of TB

March 24, 2017

(Reuters) – South Africa launched a new drug program to treat multidrug-resistant tuberculosis (TB) on Friday in a bid to combat the leading cause of natural deaths in Africa’s most industrialized economy. The Health Department said it will run a clinical research program for the drug Delamanid, made by Japan’s Otsuka Holdings Co Ltd, involving 400 patients over the next two years.“Resistance is very minimal to it. The added advantage of this drug is it is more tolerable,” Health Minister Aaron Motsoaledi told a briefing for World TB Day in Johannesburg.

Source: Bioethics.com.

This article was originally published on Bioethics.com under a Creative Commons License.

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

Scales and the Emotional Underside of Fatphobia

Michael Orsini explains the pervasiveness of discrimination, fear, and hatred related to ‘fatness.’

__________________________________________

It’s convenient to dismiss the recent flap over the removal of scales at the Carleton University gym as yet another case of political correctness run amok.

Did Carleton Athletics simply cave in to pressure from overly sensitive gym patrons who were ‘triggered’ by the sight of a scale? While tempting, that would be the wrong question to ask in the wake of this controversy. Rather, what is it about weight itself that would unleash such a torrent of emotion and name-calling?

Conservative media commentators mocked the University for its decision, revealing the extent to which the conservative battle against political correctness is fueled by ugly views about fatness.

That is not to say that all liberals are fat-loving citizens. Far from it. Fatness arouses a range of complex moral emotions in all of us, from feelings of pity and sympathy to fear and disgust, regardless of our ideological leanings.

In a world in which we come to rash conclusions about people based upon their appearance, being fat or ‘obese’ is shorthand for being slovenly, lazy, and ‘out of control.’ As Nobel Prize winner Daniel Kahneman argues in his best-selling book, Thinking, Fast and Slow, we often make decisions based on visceral feelings, strongly felt emotions that typically serve as poor guides. For example, in discussing the palpable fear of shark attacks, Freeman Dyson notes that we pay more attention to sharks because they frighten us, even though “riptides occur more frequently and may be equally lethal.”

How does this matter 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 News

The Findings of Medical Research Are Disseminated Too Slowly

That is about to change. On January 1st, the Bill & Melinda Gates Foundation brought into force a policy, foreshadowed two years earlier, that research it supports must, when published, be freely available to all. On March 23rd it followed this up by announcing that it will pay the cost of putting such research in one particular repository of freely available papers

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

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

The First Cut is the Deepest

March 23, 2017

by Sean Philpott-Jones, Chair, Bioethics Program of Clarkson University & Icahn School of Medicine at Mount Sinai

The First Cut is the Deepest

Last week, President Trump publicly unveiled his 2018 budget proposal. If left unchanged, that financial blueprint would increase US federal defense spending by more than $50 billion, while also appropriating billions more to bolster immigration enforcement and build a 2,000 mile-long wall along the US border with Mexico. A self-proclaimed deficit hawk, the President would offset those increased expenditures will sharp cuts to the US Departments of State, Energy, Health and Human Services, and the US Environmental Protection Agency.

In sharp contrast to campaign trail promises to boost the economy, create jobs, and protect Americans at home and abroad, however, Trump’s 2018 budget is likely to do the exact opposite. Consider, for example, the proposal to cut nearly $6 billion from the US National Institutes of Health (NIH).

Made up of 27 different institutions and centers, the NIH is the largest supporter of biomedical research in the world. Through the NIH or other funding agencies, the federal government supports almost half of all the biomedical research in the US. Private businesses support another quarter, and the remainder of biomedical research support comes from state governments and nonprofit organizations.

With an annual operating budget of $30 billion, the NIH provides training and support to thousands of scientists at its main campus in Bethesda, Maryland. Moreover, through a system of extramural grants and cooperative agreements, the NIH provides financial support for research-related programs to over 2,600 institutions around the country, creating more than 300,000 full- and part-time jobs.

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

PLOS Pathogens Continues Bridging Communities through Polymicrobial Research

The PLOS Pathogens staff  reflects on successful Co- and Polymicrobial Infections Collection and reaffirms its commitment to the publication of novel multidisciplinary work.  Last September, PLOS Pathogens issued a Call for Papers, inviting authors to submit

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 News

What’s the Point of an Ethics Course?

Cassandra Burke Robertson: My research suggests that when individuals are blinded by an unconscious partisan bias – such as highly committed presidential staff in the White House – it can result in a failure to recognize ethical issues. They may act in ways that accidentally undermine their own political interests. Ethics courses, in other words, can make a difference

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.