Tag: harm

Bioethics Blogs

The Implications of Libertarianism for Compulsory Vaccination

Guest Post: Justin Bernstein

Paper: The Case Against Libertarian Arguments for Compulsory Vaccination

In a recent political controversy, libertarian Senator Rand Paul articulated his opposition to a policy of compulsory vaccination, stating that he was “all for [vaccines],” but that he was “also for freedom.” U.S. opponents of vaccines often object to compulsory vaccination on the (false) grounds that vaccines cause autism. But Paul’s claim that he was “for freedom” suggests a distinct, libertarian-minded rationale for opposing compulsory vaccination.

Libertarians deny that the state has the right to restrict individual liberty in order to promote welfare. A policy of compulsory vaccination promotes welfare by ensuring herd immunity. But such a policy also restricts individual liberty because it requires parents to subject their children to a medical procedure, and permits the state to punish non-compliance. So, a policy of compulsory vaccination certainly seems at odds with the libertarian’s commitment to liberty–even if herd immunity is threatened.

Some libertarians, however, attempt to avoid the controversial conclusion that libertarianism is incompatible with compulsory vaccination. In my recent paper, “The Case Against Libertarian Arguments for Compulsory Vaccination,” I argue that such attempts are unsuccessful, and so libertarians must either develop new arguments, or join Senator Paul in opposing compulsory vaccination.

How might a libertarian try to defend compulsory vaccination? One argument is that going unvaccinated exposes others to risk, and this violates their rights. Since the state is permitted to use coercive measures to protect rights, the state may require parents to vaccinate their children. But for libertarians, this argument has two shortcomings.

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 more ethical form of HIV criminalization

HIV has been criminalized throughout the history of the epidemic, or to be more exact, people living with HIV and their behaviors have been a persistent focus of criminal law. This was undoubtedly due in part to the fact that HIV initially was untreatable and infection (for the vast majority) spelt death. It was terrifying. But it wasn’t just an understandable public health reaction. Criminalization is not necessarily a wise way of controlling an epidemic, as it can be counterproductive, driving underground persons potentially subject to the laws. And there is no way of getting around that those disproportionately affected by HIV (especially in the USA), were considered ‘undesirables’ by many in the public and those leaders they voted for. Criminalization also reflected a moral panic against homosexuals and injection drug users. So, because it was not really based on solid public health principles or scientific evidence in the first place, it is unsurprising that states made laws covering actions highly unlikely to lead to transmission (like spitting or oral sex), fail to take the use of new prevention technologies (PreP, use of antiretrovirals) into account, and often don’t take into consideration the intention to cause harm. What is perhaps more surprising (and depressing) is that many of these laws are still on the books.  

I am thinking that HIV criminalization should not be abolished, but pointed in a better direction. Let me back up. For a few years now, I have been working on a NIH-funded project on the social and ethical dimensions of HIV cure research.

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

Dueling BRCA Databases: What About the Patient?

The news release Monday morning grabbed my attention:

“Study finds wide gap in quality of BRCA1/2 variant
classification between Myriad Genetics and a common public database.”

Myriad Genetics had been exclusively providing tests, for
$3000+ a pop for full BRCA gene sequencing, for 17 years before the Supreme
Court invalidated key gene patents back in 2013. Since the ruling a dozen or so
competitors have been offering tests for much lower prices. Meanwhile, Myriad
has amassed a far deeper database than anyone else, having been in the business
so much longer. And it’s proprietary.

CLASSIFYING GENE VARIANTS

(NHGRI)

Public databases of variants of health-related genes have
been around for years too. The best known, ClinVar, collects and curates data
from the biomedical literature, expert panels, reports at meetings, testing
laboratories, and individual researchers, without access to Myriad’s database.
ClinVar uses several standard technical criteria to classify variants as
“pathogenic,” “benign,” or “of uncertain significance.” (“Likely pathogenic”
and “likely benign” were used more in the past.)

ClinVar lists 5400 variants just for BRCA1. The criteria
come from population statistics, how a particular mutation alters the encoded
protein, effects on the phenotype (symptoms), and other information.
Bioinformatics meets biochemistry to predict susceptibility. The BRCA1 protein
acts as a hub of sorts where many other proteins that control DNA repair
gather. DNA Science discussed the genes behind breast and ovarian cancers here.

As gene sequences accumulate in the databases and troops of
geneticists and genetic counselors annotate them, the proportion of pathogenic
and benign entries will increase as that of the unsettling “variants of
uncertain significance” — VUS — will decrease.

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

Dueling BRCA Databases: What About the Patient?

The news release Monday morning grabbed my attention:

“Study finds wide gap in quality of BRCA1/2 variant
classification between Myriad Genetics and a common public database.”

Myriad Genetics had been exclusively providing tests, for
$3000+ a pop for full BRCA gene sequencing, for 17 years before the Supreme
Court invalidated key gene patents back in 2013. Since the ruling a dozen or so
competitors have been offering tests for much lower prices. Meanwhile, Myriad
has amassed a far deeper database than anyone else, having been in the business
so much longer. And it’s proprietary.

CLASSIFYING GENE VARIANTS

(NHGRI)

Public databases of variants of health-related genes have
been around for years too. The best known, ClinVar, collects and curates data
from the biomedical literature, expert panels, reports at meetings, testing
laboratories, and individual researchers, without access to Myriad’s database.
ClinVar uses several standard technical criteria to classify variants as
“pathogenic,” “benign,” or “of uncertain significance.” (“Likely pathogenic”
and “likely benign” were used more in the past.)

ClinVar lists 5400 variants just for BRCA1. The criteria
come from population statistics, how a particular mutation alters the encoded
protein, effects on the phenotype (symptoms), and other information.
Bioinformatics meets biochemistry to predict susceptibility. The BRCA1 protein
acts as a hub of sorts where many other proteins that control DNA repair
gather. DNA Science discussed the genes behind breast and ovarian cancers here.

As gene sequences accumulate in the databases and troops of
geneticists and genetic counselors annotate them, the proportion of pathogenic
and benign entries will increase as that of the unsettling “variants of
uncertain significance” — VUS — will decrease.

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 economics of patient safety:adopting a value based approach

By John Tingle The OECD (Organisation for Economic Co-operation and Development) have recently published a report on the economics of patient safety.The report is in two main sections, section 1, the cost of failure and section 2, reducing harm effectively and … Continue reading

Source: Bill of Health, examining the intersection of law and health care, biotech & 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

An Assessment of Mitochondrial Replacement Therapy

By: Alexa Woodward

Last year, a baby boy was born from an embryo that underwent mitochondrial replacement therapy (MRT). MRT was used to prevent this child from inheriting a mitochondrial disease from his mother, specifically infantile subacute necrotizing encephalomyelopathy – a disease that affects the central nervous system and usually results in death within the first few years of life. While controversial, assisted reproductive technologies (ARTs) such as MRT provide prospective parents with additional options and have the potential to improve the quality of human life by preventing disease.

This story is of bioethical interest because this technique results in germline modification, which is the alteration of DNA in the reproductive cells of humans that will be passed on to their offspring. Implementing MRT in humans has consequentially garnered much criticism, from simple health-related implications (such as unknown harms to potential offspring and eugenics concerns) to the futuristic next logical step of scientific intervention; directly editing the nuclear genome.

With MRT, modifications affect the mitochondrial genome (mtDNA), not the nuclear genome. Researchers emphasize the lack of bearing that mtDNA has on personal characteristics and the overall maintenance of “genetic integrity,” especially when compared to using the whole donor egg with an “unrelated” nuclear genome.1 Even so, additional concerns arise regarding the long-term anthropological effects, blurring the distinction between therapy and enhancement, and issues of resource allocation.

Mutations and deletions  in the mitochondrial genome can result in mitochondrial diseases affecting the neurological, musculoskeletal, cardiac, gastrointestinal, renal, and other systems, all of which are incurable.  MRT uses the intended parents’ nuclear DNA in conjunction with a donor’s mitochondria.

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

Blinded by the Promise of Stem Cell Treatments

Alan F. Cruess cautions against the use of unproven stem cell ‘treatments.’

__________________________________________

Recently, many of you may have read about three patients who are blind after receiving stem cell ‘treatments.’  The patients were ‘treated’ at a Florida clinic for age-related macular degeneration. This common eye condition is the leading cause of vision loss among people over the age of 50. The clinic harvested stem cells from the patients using liposuction and then injected these stem cells into their eyes. Again, these three patients, are now all blind as a result of this unproven ‘treatment.’

There are two types of age-related macular degeneration: ‘wet’ and ‘dry.’ In recent years, treatment of wet macular degeneration has been transformed by new drugs which can be very effective if they are applied early. Meanwhile, treatment of the more common dry macular degeneration remains elusive. As such, patients with dry macular degeneration may be desperate to prevent and reverse blindness and willing to try emerging regenerative therapies.

Some experimental stem cells treatments to prevent blindness are promising, and they are being studied worldwide in laboratories and highly regulated clinical trial settings. In these settings, the safety and efficacy of experimental treatments can be closely monitored. Yet, the safety and efficacy should be called into question when these so-called ‘treatments’ are marketed outside of the research context. This was the case at the Florida clinic.

Before subjecting oneself or a loved one to any new ‘treatment’ with stem cells patients should be informed about the risks and potential benefits of the proposed treatment.

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

Rape, disability, and gender: A response to McMahan and Singer’s op-ed on the Anna Stubblefield case

Unfortunately, there have been numerous cases of sexual
harassment and sexual assault in academia and particularly in more
male-dominated fields, including my home field of philosophy. In these cases,
professors use their position of prestige and power to sexually harass and
abuse their students. UC Berkeley philosophy professor John
Searle
is just the most recent example. To my knowledge, all of these cases
have involved male professors victimizing female students. The lone exception
is Anna
Stubblefield
, a former professor of philosophy at Rutgers. Here is a
summary of her case from Current Affairs

At issue is the case of Anna
Stubblefield, a Rutgers University philosophy professor convicted of sexually
assaulting her mentally disabled pupil, and sentenced to 12 years in prison.
The case is, to say the least, extremely unusual. The student, D.J., was a
severely impaired 30 year old man with cerebal palsy, who had never spoken a
word in his life and communicated through “screams” and “chirps.” Stubblefield
acted as his personal tutor, using a discredited pseudoscientific technique to
elicit what she insisted were complex communications from D.J. Eventually,
based on what she believed D.J. wanted, Stubblefield began engaging in sex acts
with him, having become romantically attracted to him over the course of her
time assisting him.  

Stubblefield’s case is not only different because she is a
woman and her victim is a man, but also because she is one of the few
professors to go through the legal system and be convicted.

There are
many complexities to Stubblefield’s case and I don’t have the space to address
them all 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 Blogs

Penny-Foolish

April 07, 2017

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

Penny-Foolish

The 2018 federal budget battle has barely begun and already critics – including myself – are questioning the wisdom of Trump’s proposal to drastically cut key agencies like the US Department of State, Health and Human Services, and the Environmental Protection Agency in order to build a wall that no one wants, to buy fighter jets that no one needs, and to give tax breaks that no one earned.

The Trump Administration claims that the President’s proposal will make Americans safer, healthier, and wealthier, but the unprecedented cuts and reallocations in this budget are likely to make us poorer, sicker, and endangered. They are also likely to do irreparable harm to America’s image overseas. Although Ronald Reagan famously described America as “a shining city upon a hill whose beacon light guides freedom-loving people everywhere,” we will soon be seen as the exact opposite as the very programs that save lives, promote equality, combat poverty, and advance human rights – the very values and ideals that Americans cherish – are dismantled.

Consider, for example, Trump’s plan to cut funding from a program that provides life-saving treatment to those living with HIV/AIDS across the globe. Known as the President’s Emergency Plan for AIDS Relief (PEPFAR), that program was created in 2003 by then President George W. Bush. It would not be hyperbole to describe PEPFAR as President Bush’s greatest legacy, redeeming an otherwise disastrous administration best known for embroiling America in an unjust and seemingly unending war in the Middle East and for trigger the worst financial disaster since the Great Depression.

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 Dangers and Challenges of Weaponizable Neuroscience: A Call for Renewed Engagement

Photo Source: This Image was released by the United States Navy with the ID 021015-N-6996M-109 (http://bit.ly/2oQFUdh)

BY DR. DIANE DIEULIIS and DR. JAMES GIORDANO

The chemical weapon attack in Syria that has killed at least 70 people employed the nerve gas sarin. And, it is believed that it was the nerve agent VX that was used to assassinate Kim Jong-nam in a public airport. These uses of nerve agents violate the international Chemical Weapons Convention (CWC). While the Syrian government signed the CWC in 2013, it was never ratified, and of course, signatory agreement does not guarantee compliance. Nor do such treaties among nation states necessarily provide any security against the development and use of biological and chemical weapons by non-state actors. These events are disturbing and, we believe, portend a larger, and ever growing issue of how such neurological agents could be used, altered and/or developed anew as weapons.

International advances in brain science over the past decade are enabling ever greater capabilities to control neurological processes of thought, emotion and behavior. So, while the CWC and Biological Toxin and Weapons Convention (BTWC) prohibit development of drugs, microbes and toxins that can be made into weapons, these prohibitions are not absolute – many of these substances can be – and are – used in basic neuroscience research, or in research programs that seek to develop defenses against biochemical weapons. What’s more, new tools and methods with which to edit genes, such as CRISPR/Cas9, can make it easier to modify bacteria, viruses or certain toxins to be weaponized.

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.