Tag: blood

Bioethics Blogs

Memo To White Nationalists From A Geneticist: Why White Purity Is A Terrible Idea

On
August 14th, UCLA researchers Aaron Panofsky and Joan Donovan presented
findings of their study,  “When Genetics Challenges a Racist’s Identity: Genetic
Ancestry Testing among White Nationalists,”
 at a sociology
conference in Montreal. They’d analyzed 3,070 comments organized into 70
threads publicly posted to the (sometimes difficult to access) “social movement
online community”  Stormfront.

Former
KKK Grand Wizard Don Black launched Stormfront on March 27, 1995. Posts exceed
12 million, ramping up since the 2016 election season. Panofsky and Donovan’s
report has a lot of sociology speak, such as “scholars of whiteness” and
“affiliative self-fashioning,” amid some quite alarming posts – yet also
reveals a sophisticated understanding of genetics from some contributors.

A
WHITE NATIONALIST ONLINE MEET-UP: STORMFRONT

“We are the voice of the new, embattled White minority!”proclaims the
bold, blood-tinged-hued message on the opening page of Stormfront, the “community
of racial realists and idealists.”
 It’s a site for white nationalists,
who are a little less extreme than white supremacists, who want to dominate the
world from their pinnacle of a perceived racial hierarchy. The Stormfronters
seem more concerned with establishing their white purity – defined as “non-Jewish
people of wholly European descent.”

Yet
the lines between white nationalist and supremacist blur, as Stormfront states, “If Blacks or
Mexicans become a majority, then they will not be able to maintain the White
man’s social, cultural and economic systems because they do not have to (sic)
minds needed to do so.”

The
idea of white rights is rather new, catalyzed by the revolts of the truly
marginalized, murdered, abused, ignored, and enslaved.

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

Book Review: Cells Are The New Cure (BenBella Books, Inc., 2017). ISBN 9781944648800.

$26.95. Reviewed by Michael S. Dauber, MA

 

Cells Are The New Cure, written by Robin Smith, MD, and Max Gomez, PhD, is a book about the history of medical research on cells, both human and non-human, and recent developments in these techniques that have made cellular medicine one of the most promising fields for therapeutic exploration. While the book’s title suggests an exclusive focus on the healing aspects of genetic modification and human stem cell therapy, the text is much more than that: it is a roadmap for understanding the origins of such techniques, the current state of affairs in cellular and genetic therapies, the administrative landscape investigators must traverse in conducting research, and the areas in which we still need to make progress.

Smith and Gomez make an argument that is structurally simple yet gripping: they suggest that targeted therapies involving stem cells and genetic modifications are the future of medicine by pointing to the immense amount of studies in those fields that have yielded beneficial results. While many readers might acknowledge this fact even before reading the book, many may not be aware of the full extent of the knowledge we have gained from research on cells and genetics, or the myriad ways this knowledge has been applied. Of course, Smith and Gomez cover the big diseases that most people think of when imagining medical research: cancer, heart disease, neurodegenerative conditions, etc. However, the book also contains detailed information about how we age, what may cause certain allergies, how the body repairs itself, and the ways stem cell therapies, genetic editing techniques, and other complex medicines that build on these methods can be used to treat these conditions.

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

Hunting a Killer: Sex, Drugs and the Return of Syphilis

August 24, 2017

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OKLAHOMA CITY — For months, health officials in this socially conservative state capital have been staggered by a fast-spreading outbreak of a disease that, for nearly two decades, was considered all but extinguished.

Syphilis, the deadly sexually transmitted infection that can lead to blindness, paralysis and dementia, is returning here and around the country, another consequence of the heroin and methamphetamine epidemics, as users trade sex for drugs.

To locate possible patients and draw their blood for testing, Oklahoma’s syphilis detectives have been knocking on doors in dilapidated apartment complexes and dingy motels, driving down lonely rural roads and interviewing prison inmates. Syphilis has led them to members of 17 gangs; to drug dealers; to prostitutes, pimps and johns; and to their spouses and lovers, all caught in the disease’s undertow.

… Read More

Image: By Nydorf, Seymour, 1914-2001, Artist (NARA record: 8467706) – U.S. National Archives and Records Administration, Public Domain, https://commons.wikimedia.org/w/index.php?curid=17203998

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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 Reflection on Blood Donation Policy in Canada

Landon J. Getz reflects on the current sexual abstention period within Canada for blood donations by men who have sex with men.

__________________________________________

Driving through Halifax during pride week, I noticed a Pride advertisement on the back of a city bus. It noted a headline from a Global News article titled: Canada’s limitations on gay blood donations ‘ridiculous’: HIV researchers. Currently, in Canada, men who have sex with men are prohibited from donating blood if they have had sex with a man in the year prior to their donation. Even though many LGBTQ advocates and HIV researchers are saying this deferral period on blood donation by men who have had sex with men is ‘ridiculous,’ Canadian Blood Services and Health Canada do not seem to agree. Approximately one year ago, the current 1-year deferral period policy replaced a 5-year deferral period. The anniversary of this policy change marks an opportunity to reflect on Canada’s blood donation policy and what it means for the LGBTQ community.

Historically, bans, deferral periods, and restrictions on blood donation by gay/bisexual men have been rooted in fear of harming patients by exposing them to contaminated blood. HIV was discovered in 1983, and from there new methods of diagnosis were discovered. Unfortunately, this did not stop HIV-infected blood from entering the blood supply, leading to what is known today as the “Tainted Blood Scandal.” Consequently, roughly 2000 Canadians were exposed to HIV via blood products in the early 1980s. However, a lack of policy and proper diagnostic testing procedures played important roles in this problem.

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

Guest Post: Track Authorities Are Wrong To Ban Women With Naturally High Testosterone levels

Michael S. Dauber, MA

 According to a story by Catherine Caruso published in STAT News this week, authorities at the International Association of Athletics Federations (IAAF) are getting set to debate whether or not women with hyperandrogenism, or higher-than-expected testosterone levels, should be restricted from competing against women with “normal” or “expected” levels. The debate over the IAAF rules began in 2011, when a rule was first created to prevent women with high testosterone levels competing because of the belief that their hormone levels gave them an unfair advantage. The rule was challenged in 2015, and the IAAF was given two years to provide further justification for its position.

As Caruso writes, the main focus of the current controversy is the legal case of Dutee Chand, an Indian athlete whose testosterone levels exceed “the 10 nanomoles per liter limit, the level deemed to be the lower end of the ‘male range,’” i.e., the amount of testosterone in the blood typically exhibited by male athletes. Testosterone is widely considered a hormone that assists in athletic performance, given that it increases the rate of muscle development and bone mass, among other traits. The idea behind the IAAF’s position is that “unnaturally” high levels of testosterone that exceed levels typical of one’s gender would give such athletes an unfair advantage over other competitiors. Insofar as the IAAF is concerned with creating the fairest competition possible, the presence of elevated testosterone levels in a select group of athletes, like Chand, presents a serious problem.

The problem with the IAAF’s position, however, is that it overlooks one of the central nuances of sporting ethics.

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

Lessons from the West African Ebola epidemic

Conventional wisdom—and an article in the Journal of Medical Ethics reviewed on this blog two years ago—advise that health research should not be conducted during times of crisis. Yes, such conditions compromise the controlled environments that studies typically require to produce reliable results, but they can also threaten the ethical integrity of research. Without institutional mechanisms to hold them accountable, investigators may cut corners, violate standards of privacy and informed consent, and even endanger participants. Disruption in the normal function of medical services can also apply pressure on individuals unable to access care by traditional means to seek it out by participating in risky research. And even if one assumes that researchers display honesty beyond reproach, it is still unreasonable to expect that they would be able to keep their cool in the midst of widespread panic and social collapse. But there is a fly in the ointment, at least when it comes to crises caused by epidemics. Public health organizations are first-responders at these moments, but they would be dead in the water without relevant data collected under real-world conditions to guide their actions. In this situation, the precautionary principle alone is not enough to stop a study altogether. In fact, it could be argued that an absolute prohibition against biomedical research in such situations may itself be unethical. The question then becomes, not whether, but how to guarantee ethical research during outbreaks?

The Ethics Review Board (ERB) of Médecins Sans Frontières (MSF) had to contend with this question during the 2014 Ebola epidemic. They recently chronicled their experience in the April issue of Public Health Ethics.

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

Cyber Security & Implanted Bio-Monitoring Devices

Dylan Roskams Edris describes risks associated with implantable remote bio-monitoring devices.

__________________________________________

Over the past few years, there has been a rapid growth in the development of implantable remote bio-monitoring systems for medical purposes. For example, implantable monitors that allow for constant monitoring of blood glucose and heart status are being tested in clinical trials. A defining feature of implantable monitors for medical care is the ability to transmit the data they collect wirelessly without patient intervention. Suzanne E. Spaulding, former Under Secretary for the U.S. Department of Homeland Security, said that: “It has been predicted that by 2020 the internet will expand to include 50 billion connected devices.”  We can expect that this will include the expansion of bio-monitoring systems.

The appeal of such technology is clear. For chronic conditions like diabetes, the early detection of hypoglycemia can let the patient or healthcare professional take emergency action or notify paramedics before the patient has a potentially fatal seizure. In addition, if a physician or sufficiently sophisticated medical system can access data related to a chronic condition on a remote basis preventive measures can be taken to stop dangerous acute symptoms from occurring in the first place.

However, the uptake of implantable remote bio-monitoring also poses several risks. First, there is a risk that bio-monitoring devices could be illegally hacked or intercepted. If the operation of a device is dependent on the transfer of information between the device and some centralized healthcare system then interference with information going in either direction could affect the device’s function.

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

Does Female Genital Mutilation Have Health Benefits? The Problem with Medicalizing Morality

By Brian D. Earp (@briandavidearp)

Please note: this piece was originally published in Quillette Magazine.

 

Four members of the Dawoodi Bohra sect of Islam living in Detroit, Michigan have recently been indicted on charges of female genital mutilation (FGM). This is the first time the US government has prosecuted an “FGM” case since a federal law was passed in 1996. The world is watching to see how the case turns out.

A lot is at stake here. Multiculturalism, religious freedom, the limits of tolerance; the scope of children’s—and minority group—rights; the credibility of scientific research; even the very concept of “harm.”

To see how these pieces fit together, I need to describe the alleged crime.

* * *

The term “FGM” is likely to bring to mind the most severe forms of female genital cutting, such as clitoridectomy or infibulation (partial sewing up of the vaginal opening). But the World Health Organization (WHO) actually recognizes four main categories of FGM, covering dozens of different procedures.

One of the more “minor” forms is called a “ritual nick.” This practice, which I have argued elsewhere should not be performed on children, involves pricking the foreskin or “hood” of the clitoris to release a drop of blood.

Healthy tissue is not typically removed by this procedure, which is often done by trained clinicians in the communities where it is common. Long-term adverse health consequences are believed to be rare.

Here is why this matters. Initial, albeit conflicting reports suggest that the Dawoodi Bohra engage in this, or a similar, more limited form of female genital cutting – not the more extreme forms that are often highlighted in the Western media.

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

Does Female Genital Mutilation Have Health Benefits? The Problem with Medicalizing Morality

Does Female Genital Mutilation Have Health Benefits? The Problem with Medicalizing Morality

By Brian D. Earp (@briandavidearp)

Please note: this piece was originally published in Quillette Magazine.

 

Four members of the Dawoodi Bohra sect of Islam living in Detroit, Michigan have recently been indicted on charges of female genital mutilation (FGM). This is the first time the US government has prosecuted an “FGM” case since a federal law was passed in 1996. The world is watching to see how the case turns out.

A lot is at stake here. Multiculturalism, religious freedom, the limits of tolerance; the scope of children’s—and minority group—rights; the credibility of scientific research; even the very concept of “harm.”

To see how these pieces fit together, I need to describe the alleged crime.

* * *

The term “FGM” is likely to bring to mind the most severe forms of female genital cutting, such as clitoridectomy or infibulation (partial sewing up of the vaginal opening). But the World Health Organization (WHO) actually recognizes four main categories of FGM, covering dozens of different procedures.

One of the more “minor” forms is called a “ritual nick.” This practice, which I have argued elsewhere should not be performed on children, involves pricking the foreskin or “hood” of the clitoris to release a drop of blood.

Healthy tissue is not typically removed by this procedure, which is often done by trained clinicians in the communities where it is common. Long-term adverse health consequences are believed to be rare.

Here is why this matters. Initial, albeit conflicting reports suggest that the Dawoodi Bohra engage in this, or a similar, more limited form of female genital cutting – not the more extreme forms that are often highlighted in the Western media.

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: An Ethical Analysis of a Legal non-Problem

(Cross-posted from EJIL: Talk!)

For those with an internet connection and an interest in current affairs, the story of Charlie Gard been hard to avoid recently.  A decent précis is available here; but it’s worth rehearsing.

Shortly after his birth, Charlie’s health began to deteriorate, and he was diagnosed with a terminal and incurable mitochondrial DNA depletion syndrome.  By March 2017, Charlie needed artificial ventilation, and doctors at Great Ormond Street Children’s Hospital (GOSH) applied to the High Court for confirmation that removing that ventilation would be lawful, having judged that it was not in his best interests.  This was contested by his parents, Chris Gard and Connie Yates; the High Court ruled in favour of GOSH.  This was confirmed by the Supreme Court and the European Court of Human Rights.  During all this time, Charlie remained ventilated.

In the High Court, Mr Justice Francis said that his decision was subject to revision should new evidence emerge favouring continued treatment; in July, Charlie’s parents returned to the High Court, claiming that Charlie might benefit from an experimental treatment being offered by Professor Michio Hirano of Columbia University.  However, as proceedings advanced, it became clear that Hirano’s proposed treatment had never been used on patients like Charlie, that he had neither seen Charlie nor read his notes when he offered the treatment, and that he had a financial interest in that treatment.  The position statement issued by GOSH on the 24th July barely hides the hospital’s legal team’s exasperation.  On the 24th July, Charlie’s parents dropped their request for continued treatment.  The details of Charlie’s palliative care were still disputed; his parents wanted it to be provided at home, with ventilation maintained for a few days.  The High Court ruled against this on the 27th July.  Charlie was moved to a hospice; his ventilator was removed, and he died on the 28th July, a few days before his first birthday.

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.