Tag: analogy

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 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 ‘Weird’ First Fortnight of the Foetus: Implications for the Abortion Debate

Guest Post: William Simkulet
Paper: The Cursed Lamp: The Problem of Spontaneous Abortion

For many people, the moral status of abortion stands or falls whether or not a human fetus is morally comparable to you or I; whether its death is a significant loss.  Many people believe human fetuses have a right to life from conception, and thus conclude that there is good reason to think induced abortion is seriously morally wrong.  Judith Jarvis Thomson challenges this belief, constructing a scenario where she believes it is morally acceptable to end the life of a person because although he has a right to life, his right to life does not give him a right to use your body.  Her example should be familiar:

Violinist:  You wake up in the hospital, surgically attached to a violinist.  Your doctor explains that last night the Society of Music Lovers kidnapped the two of you and performed the surgery.  The violinist has a serious condition that will result in his death soon unless he remains attached to your kidneys for the next 9 months (you alone are biologically compatible).

The violinist has a right to life, and surely you are free to let him remain attached to your body to save his life.  It would be a great kindness for you to do so, but Thomson says that the violinist’s right to life does not give him the right to use your body.  Anti-abortion theories that focus on the moral status of the fetus neglect to show why the fetus’s moral status – its argued for right to life – would give it a right to use the woman’s body.

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 Impossibility of the Inert: Placebo and the Essence of Healing by Thomas J. Csordas

The concept of placebo is predicated on the opposition between active and inert, deploying this opposition to assert that an action or substance with no inherent active principle can have a paradoxical effect “as if” it were active.1 My thesis is that there is no such thing as the inert in human affairs, relationships, or experience. Think of the apparently simple retort of the bullied child that “sticks and stone may break my bones but names can never hurt me.” Contrary to this retort, names can indeed hurt. They are not inert, but carry an actual force identifiable as hate or disdain. And what of the retort itself? Is it a vain, desperate, and ultimately inert act of self-protection, effective only insofar as it taps into the “as if” logic of the placebo? I think not, though like any remedy it must be applied under the right conditions and with the understanding that it may not be uniformly effective in the degree to which it buffers the noxious influence of name-calling with an equivalent, self-confident force of self-esteem. There is also, however, an easily overlooked element of materiality in the retort. That is its rhythm: the fact that it is phrased in trochaic meter. It is not only that meter adds the force of incantation or song, but that it directly engages the embodied existential immediacy of the situation, contributing an element of jauntiness encompassing not only tone of voice but posture and gesture.

The notion of materiality as I have just used it is of value in reflecting on the impossibility of the inert.

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

How to make Nazi doctors

Most people who go into medicine have as at least part of their motivation the desire to help other people. I’m sure this was as true in 1930’s Germany as anywhere else. So how did a cadre of Nazi doctors come not only to commit crimes against humanity, but also to defend the moral correctness of their conduct when placed on trial for those crimes? The answer is complex, but one way was through the teaching of medical ethics.

An article in the April 18th Annals of Internal Medicine tells a cautionary tale for teachers and learners of bioethics. Entitled “Lectures on Inhumanity: Teaching Medical Ethics in German Medical Schools Under Nazism,” the article details how the Nazi party developed a curriculum for teaching ethics in medical schools that “was intended to explicitly create a ‘new type of physician’ . . . trained to internalize and then implement the Nazi biomedical vision . . . shifting the focus of ethical concern and medical care away from the individual patient and toward the general welfare of society or the people.” The curriculum included lectures in racial hygiene, the science of heredity, population policy, military medicine, and the history of medicine. Only long-standing members of the Nazi party were appointed lecturers. The lecturer at Berlin University, Rudolf Ramm, wrote the ethics textbook used in the curriculum, which emphasized physician paternalism in practicing their moral obligation to rid society of certain groups, and asserted that every (Aryan) person in Germany had a moral duty to stay healthy.

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

Donald Trump’s Mental Health (again)

The speculation about Donald Trump’s mental health that was doing the rounds earlier in the year seems to have died down a bit.  That’s to be expected; like it or not, his Presidency is now part of normal life.  But I’ve been lagging in my blogging here, and so it’s only now that I’ve got a moment to mention in passing an op-ed article about Trump in the New Scientist that appeared just after I posted last on the topic.  (February.  I know, I know.)

It’s by Allen Frances, and it takes issue with what he calls “armchair diagnosis” of the president.  He’s right to say that there’s something disquieting about armchair diagnosis: “psychiatric diagnosis is already done far too casually and inaccurately in medical and mental health practice.  Armchair diagnosis further cheapens its currency.”  However, I do wonder whether we ought to pay some attention to whose armchair it is.  Often, it’s an armchair occupied by the genuinely ignorant, or the spiteful.  That’s the internet for you.  Accusing someone of being mentally ill or having a personality disorder on this account may be simply mistaken; or it may be intended as a jibe, the subtext of which is that there’s something shameful about having a mental health problem.  But not every armchair is the same: as Frances’ article admits, a letter with 35 signatories who work within the mental health field appeared in the New York Times.  That letter may be misguided, or ill-motivated.  But it is by people who, presumably, know a thing or two about the topic. 

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

Cross Post: Solomon’s frozen judgement

Written by Anders Sandberg

This post was originally published on Andert II

A girl dying of cancer wanted to use cryonic preservation to have a chance at being revived in the future. While supported by her mother the father disagreed; in a recent high court ruling, the judge found that she could be cryopreserved.

As the judge noted, the verdict was not a statement on the validity of cryonics itself, but about how to make decisions about prospective orders. In many ways the case would presumably have gone the same way if there had been a disagreement about whether the daughter could have catholic last rites. However, cryonics makes things fresh and exciting (I have been in the media all day thanks to this).

What is the ethics of parents disagreeing about the cryosuspension of their child?

Best interests

One obvious principle is that parents ought to act in the best interest of their children.

If the child is morally mature and with informed consent, then they can clearly have a valid interest in taking a chance on cryonics: they might not be legally adult, but as in normal medical ethics their stated interests have strong weight. Conversely, one could imagine a case where a child would not want to be preserved, in which case I think most people would agree their preferences should dominate.

The general legal consensus in the West is that the child’s welfare is so important that it can overrule the objections of parents. In UK law parents have the right and the duty to give consent for a minor.

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

Conscientious Objection Accommodation in Healthcare – Clashing Perspectives

by Brian D. Earp / (@briandavidearp)

On behalf of the Journal of Medical Ethics, I would like to draw your attention to the current issue, now available online, which is almost entirely dedicated to the vexing question of conscientious objection in healthcare. When, if ever, should a healthcare provider’s personal conviction about the wrongness of some intervention (be it abortion, euthanasia, or whatever) be accommodated?

In a paper that has already attracted much attention, Ricardo Smalling and Udo Schuklenk argue that medical professionals have no moral claim to conscientious objection accommodation in liberal democracies.

In part, they base their argument on their judgment that “the typical conscientious objector does not object to unreasonable, controversial professional services—involving torture, for instance—but to the provision of professional services that are both uncontroversially legal and that patients are entitled to receive” (emphasis added).

It seems clear that a lot hinges on what is meant by “unreasonable” there–and on who should get to decide what falls under that label. One answer to this question might be, “society should get to decide, through the enactment of laws, which ideally express the view of the majority of people as to what is reasonable or unreasonable in medical and other contexts.”

“Therefore,” this answer continues, “if a doctor thinks that some legally allowed service X is immoral, then she should rally her fellow citizens to lobby their representatives to change the relevant law; but she should not be excused from providing the service, if by law the patient is entitled to receive it.”

“And if she really doesn’t want to do X,” the answer concludes, “she can always leave the profession and take up some other line of work.”

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

Professional Codes and Diagnosis at a Distance

This is the second part of my response to Trish Greenhalgh’s post on the propriety of medics, psychiatrists in particular, offering diagnoses of Donald Trump’s mental health.  In the last post, I concentrated on some of the problems associated with making such a diagnosis (or, on reflection, what might be better called a “quasi-diagnosis”).  In this, I’m going to concentrate on the professional regulation aspect.

Greenhalgh notes that, as a UK medic, she is bound by the GMC’s Duties of a Doctor guidance,

which – to my surprise – does not explicitly cover the question of a doctor’s duty towards a public figure who is not his or her patient.

[…]

My reading of the GMC guidance is that in extreme circumstances, even acknowledging the expectation of how doctors should normally behave, it may occasionally be justified to raise concerns about a public figure (for example, when the individual is relentlessly pursuing a course of action that places many lives at risk). Expressing clinical concern in such circumstances seems to involve a comparable ethical trade-off to the public interest disclosure advice (Duties of a Doctor paragraphs 53-56) that breach of patient confidentiality may be justified in order “to prevent a serious risk of harm to others.”

Well, to be honest, it’s not that much of a surprise to me that the GMC guidelines doesn’t stretch to public figures – but that’s a minor point.

The more interesting thing for me is what the relationship is between the practitioner and the GMC.  Greenhalgh ends her post by saying that she “wrote this blog to promote further debate on the topic and invite the GMC to clarify its position on it”. 

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.