Tag: technology

Bioethics Blogs

Treatment of Premature Ejaculation: Alleviating Sexual Dysfunction, Disease Mongering?

by Brian D. Earp / (@briandavidearp)

An interesting new paper, “Distress, Disease, Desire: Perspectives on the Medicalization of Premature Ejaculation,” has just been published online at the Journal of Medical Ethics.  According to the authors, Ylva Söderfeldt, Adam Droppe, and Tim Ohnhäuser, their aim is to “question the very concept of premature ejaculation and ask whether it in itself reproduces the same sexual norms that cause some to experience distress over ‘too quick’ ejaculations.” To prime the reader for their project, they begin with a familiar story:

a condition previously thought of as a variant within the normal range, as a personal shortcoming, or as a psychological issue is at a certain point cast as a medical problem. Diagnostic criteria and guidelines are (re-)formulated in ways that invent or widen the patient group and thus create or boost the market for the new drug.

Those involved in developing the criteria and the treatment are sometimes the same persons and, furthermore, cultivate close connections to the pharmaceutical companies profiting from the development.

Sufferers experience relief from personal guilt when they learn that their problem is a medical and treatable one, whereas critics call out the process as disease-mongering.

Something like this pattern has indeed played out time and time again – methylphenidate (Ritalin) for ADHD, sildenafil for erectile dysfunction, and more recently the development of flibanserin for “hypoactive sexual desire disorder” (see the excellent analysis by Antonie Meixel et al., “Hypoactive Sexual Desire Disorder: Inventing a Disease to Sell Low Libido” in a previous issue of JME).

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

M[Emory] Enhancement and its Implications

By Shweta Sahu
Imagine a situation in which you suffer from severe anterograde amnesia, a form of short term memory loss, and can’t recall information presented to you even 7 seconds before– let alone being able to remember the one thing you went to Target to buy, but forgot. Such is the case of Clive Wearing, a man known for his lack of short term memory. His wife notes, “you ask him a question and he’ll give you an answer but while he’s giving me the answer, he’s already forgotten the question. That’s how short it is.” He himself notes “the brain has been totally inactive—day and night the same—no thoughts at all.” Though this is one of the most severe cases of amnesia observed, it underscores how crucial memory is not only to every day functioning, but also for one’s sense of self. Autobiographical memories and the ability to recall these emotional and important events are an integral component of one’s identity. These events, in turn, get tied into personal narratives that our personalities are built on. In the case of Mr. Wearing, he is stuck in this personality because of the damage to his hippocampus and closely related brain regions, an area of the brain necessary for transferring information from short term to long term memory. As a result, he reports that he feels like he is dead and is constantly waking up into a new reality.
Video courtesy of YouTube

Realizing how significant memory is one thing, but the ability to recover or enhance memory is another.

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 Future of Bioethics: Organ Transplantation, Genetic Testing, and Euthanasia

By Ana Lita

When you think of bioethics, some of the first hot-button topics you may consider are organ transplantation, fertility and genetic engineering, and end-of-life-care. The Global Bioethics Initiative serves as a platform to address many bioethical questions and engages in public debates to develop resolutions to present and emerging issues.

Dr. Ana Lita, founder of the Global Bioethics Initiative, discusses the various areas GBI addresses and highlights the organization’s contributors in their prospective fields. She acknowledges the valuable contribution of the current president of GBI, Dr. Bruce Gelb, in the field of organ transplantation. She also addresses the original co-founder of GBI, Dr. Charles Debrovner, and his lifelong passion in the field of fertility and genetic engineering. Lastly, Dr. Lita offers a brief insight into the future of Bioethics in these uncertain times.

ORGAN MARKETS AND THE ETHICS OF TRANSPLANTATION 

Recent developments in immunosuppressive drugs and improved surgical techniques have now made it much easier to successfully transplant organs from one human body to another. Unfortunately, these developments have led to the rise of black-markets in human organs. This underground market is where people who need kidneys to survive or to improve the quality of their lives, for example, purchasing such organs from impoverished persons in the developing world. In January 2017, scientists announced that they successfully created the first human-pig hybrid and a pig embryo with some human characteristics. Given the increasing need for transplant organs, should such markets be regulated and legalized?  Could the success of therapeutic cloning eliminate the need to consider this option?

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

Moving Toward Answers in ME/CFS

Thinkstock/Katarzyna Bialasiewicz

Imagine going to work or school every day, working out at the gym, spending time with family and friends—basically, living your life in a full and vigorous way. Then one day, you wake up, feeling sick. A bad cold maybe, or perhaps the flu. A few days pass, and you think it should be over—but it’s not, you still feel achy and exhausted. Now imagine that you never get better— plagued by unrelenting fatigue not relieved by sleep. Any exertion just makes you worse. You are forced to leave your job or school and are unable to participate in any of your favorite activities; some days you can’t even get out of bed. The worst part is that your doctors don’t know what is wrong and nothing seems to help.

Unfortunately, this is not fiction, but reality for at least a million Americans—who suffer from a condition that carries the unwieldy name of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a perplexing disease that biomedical research desperately needs to unravel [1]. Very little is currently known about what causes ME/CFS or its biological basis [2]. Among the many possibilities that need to be explored are problems in cellular metabolism and changes in the immune system.

A number of studies suggest that abnormalities in cellular metabolism, a complex biological process that the body uses to create energy [3][4][5], may underlie ME/CFS. A recent study of metabolite pathways in blood samples from people with ME/CFS reported a signature suggestive of a hypometabolic condition, similar to a phenomenon biologists have studied in other organisms and refer to by the term “dauer” (a hibernation-like state) [5].

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

So, What is Not to Like about 3D Bioprinting?

Guest Post: Gill Haddow & Niki Vermeulen

Paper: 3D bioprint me: a socioethical view of bioprinting human organs and tissues

Bioprinter developed by Alan Faulkner-Jones & Wenmiao Shu (Strathclyde University).  Picture made by Beverley Hood (Edinburgh College of Art) during a recent laboratory visit.

Picture this: It is twenty years’ from now and , one of your organs has stopped functioning properly or even at all. You will not need to wait in the long line of the human organ transplant list however. Instead, you can have an organ ready made for you. Bespoke design and ready to use. Who would not want this as a future scenario? While 3D printing is working with inorganic materials, the intention of bioprinting is to work with organic materials (including living cells) to create structures approximating body parts. These new forms of printing, should they be fully realised, will, it is argued, have the same revolutionary and democratising effect as book printing in their applicability to regenerative medicine and industry. Individually designed biological structures or body parts will become as available as text in modern literate societies. Not only would it make organs widely available to those who need them, but 3D printing organs would also resolve entrenched ethical problems ranging from eliminating the market in human organs and avoiding recipient rejection to averting human or non-human animal organs. Therefore, long-term 3D bioprinting has the potential to be a ‘game-changer’, no longer necessitating the need for living or deceased human donation as human organs would be printed on demand.

However, the technology is not yet at the level required to bioprint entire organs.

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 14 day rule – A brief update

In early December, this blog commented upon the 7 December 2016 conference at University College London, which debated rethinking the ethics whether or not to increase the UK’s restriction on experimentation on human embryos from 14 to 28 days. One result of that conference is that the Progress Educational Trust (the sponsor of the original conference) has since submitted a request to the House of Commons Science and Technology Committee to open a new Parliamentary inquiry. That Committee’s response (in typical bureaucratic fashion) was to table the request until their current inquiry of genomics and genome editing was complete (see number 6 in their report).

In my Internet stalking of this issue, I came across a mid-January 2017 BBC Radio 4 two-part telecast coverage of the issue by Matthew Hill, which I commend to you. Each is approximately 30 minutes. Part 1 provides background information primarily regarding the general history of IVF in the UK in general and the history of the 14 day rule in particular, all done via present day interviews of the actual historical figures (or recorded interviews done at the time the events were transpiring). Note that the first 2 minutes are unrelated to the topic. Part 2 is similar, though concentrates upon the key persons in the current debate of moving from the present 14 day limit to a proposed new 28 day limit for embryo experimentation. If you don’t have time or inclination to listen to the whole series, consider the following snippets (time in minutes from start of each recording):

  • Part 1 – 12:00 – 15:00 – Baroness Mary Warnock discusses why she and the Warnock Committee settled on 14 days (arbritary, but a fixed number of days made more sense than a point in embryologic development that varied slightly from embryo to embryo).

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 significance of 37

January 30, 2017

The significance of 37

Ana Krivokuca,

MSc in Molecular Biology, PhD in Genetics

Masters in Bioethics, Clarkson University &Icahn School of Medicine at Mount Sinai (exp. June 2017)

It’s a boy! Such a familiar statement but with somewhat peculiar and mysterious echo on the morning of 29th September, 2016. While drinking my first coffee of the day, I am wondering what is so unique about this boy to put him in the headlines of CNN, The Washington Post, The New York Times, The Guardian and every other -post or -times that exist around the world . Aha! ˝World’s first baby born with new ‘three parent’ technique. Ok, this requires a larger cup of coffee….

Even though many believe that all of our genes reside in the nuclei of our cells, it’s more complicated than that. A small part of human genome (only 37 genes compared to an estimated 20,000-25,000 genes in the whole genome) is situated outside the nucleus, in the “energy factories” of the cells called mitochondria. Mutations in one of these 37 genes might cause mitochondria failure, cell damage, and even cell death. Mitochondrial diseases are usually progressive; they manifest differently and affect those parts of the body that have highest energy demands: brain, muscles or heart. These tiny pieces of DNA are inherited only from our mothers. So, each of us inherited these 37 genes from our mother, who inherited them from hers, and so on and so forth through generations.

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.