Tag: science

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 News

Debate Reignites Over the Contributions of ‘Bad Luck’ Mutations to Cancer

March 24, 2017

(Science) – How much of cancer is due to random “bad luck”? More than 2 years ago, a pair of researchers brought that question to prominence when they tried to sort out environmental versus inherited causes of cancer. They examined the extent to which stem cell divisions in healthy cells—and the random mutations, or “bad luck” that accumulate—drive cancer in different tissues. Their effort, which implied that cancer was harder to prevent than hoped and that early detection was underappreciated, sparked controversy and confusion. Now, the researchers are back with a sequel: a new paper that aims to parse “bad luck” risks by cancer type, and that brings in cancer data from other countries.

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

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 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

Intersectionality and the Dangers of White Empathy when Treating Black Patients

by Keisha Ray, Ph.D.

(Originally presented at the 7th International Health Humanities Consortium meeting in Houston, Texas)

I’ve had many odd, seemingly racially motivated experiences with racially uneducated and racially insensitive doctors and nurses. From being told by one of my white physicians that I sound white when I speak, to another physician calling me “sista girl” for what seemed like 100 times during our brief 15-minute interaction, or another physician who in disbelief kept asking me “Are you sure you’ve never been pregnant? It’s very rare for a black woman your age to not have had any pregnancies. Maybe you think I mean births, when I mean pregnancies?” At the time, I was only 25 years old. Although these stories made for good laughs between my friends and I, there is one experience that I have had with the medical profession that was less comical because my doctor’s attitudes about race could have had serious effects on my health.

When I was a senior in college I discovered I had hypertension. I went to see a doctor at a family medicine facility and was prescribed a common hypertension drug. While meeting with the doctor in her office, she was very reassuring and told me not to worry that this drug has been known to work very well for black people.

But this drug did not work for me at all. Consistently my blood pressure readings were 140/120 (what is considered “normal” varies but typically 120/80 is the standard). So after taking the drug for a month as instructed, I went back to see my doctor.

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 Semantics of Therapy, Part II

A previous blog post of “The Semantics of Therapy” posed three questions about the human genome being a “patient” to be treated. One reader found the post “provocative and disturbing” and called for further explanation and discussion of the questions posed. That will take some time and several postings.

The first of the questions to be considered is this: If the “patient” is a genome, to whom does the researcher answer?   An answer from recent history may shed some light on this important issue.

33 infertile couples underwent a novel procedure at New Jersey’s Saint Barnabas Medical Center during the years 1996-2001. Embryologist Jacques Cohen used cytoplasmic transfer–ooplasm from the oocytes of fertile women was transferred into the eggs of infertile women–in the hope of establishing pregnancies in the latter. The outcome was 13 pregnancies and 17 babies from the Saint Barnabas experience (see accounts here and here).

According to a 2014 BBC article, one resulting pregnancy, which ended in miscarriage, revealed a missing X chromosome in the fetus. The same anomaly was noted in another child: one of a set of twins from a different pregnancy. Later, one child showed evidence of developmental delay. In 2014, Cohen estimated that the worldwide experience of cytoplasmic transfer between oocytes had resulted in the births of 30-50 babies, although the FDA had effectively stopped the procedure in the U.S. in 2002.

What had the follow-up on the babies born through cytoplasmic transfer been in 2014?

Due to a lack of funding, Cohen says, it hasn’t been possible to find out about how any of the children like Alana who were born from cytoplasmic transfer are doing.

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.