Tag: probability

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In the Journals – December 2016, Part II by Anna Zogas

Here is the second part of our article roundup for December (find the first set of articles here). Happy reading, and happy new year!

New Genetics and Society

Redrawing the boundary of medical expertise: medically assisted reproduction and the debate on Italian bioconstitutionalism
Volha Parfenchyk

In 2004, the Italian Parliament passed a controversial law on medically assisted reproduction (Law 40/2004). The Law obliged clinicians to create a maximum of three embryos during one in vitro fertilization (IVF) cycle and transfer them simultaneously into the patient’s uterus. With this “three embryo” standard, the Parliament sought to secure the realization of rights of IVF embryos. Drawing on the concepts of boundary-work and bioconstitutionalism, this article explores the role that the constitutional obligations of the Italian State towards its citizens, including IVF embryos as its new “citizen subjects,” played in how it envisaged and demarcated the professional boundaries of medical expertise. It argues that the latter depended upon how it balanced its commitments to protect the rights of IVF embryos and those of adult citizens. As such, the demarcation of the jurisdictional boundaries of medical expertise, and the definition of constitutional rights, formed two sides of the same governing project.

Traveling questions: uncertainty and nonknowledge as vehicles of translation in genetic research participation
Klaus Hoeyer

In this paper, I argue that uncertainty and nonknowledge, and not just research results, can be important vehicles of translation through which genetic research participation comes to affect the lives of research participants. Based on interviews with participants in a genetic research project, I outline epistemic, emotional, relational and moral implications of research participation.

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.

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Three New Articles on Medical Futility Conflicts

Here are three relevant articles from the latest Journal of Clinical Ethics (Winter 2016, Volume 27, Number 4).

A Survey of Physicians’ Attitudes toward Decision-Making Authority for Initiating and Withdrawing VA-ECMO: Results and Ethical Implications for Shared Decision Making
Ellen C. Meltzer, Natalia S. Ivascu, Meredith Stark, Alexander V. Orfanos, Cathleen A. Acres, Paul J. Christos, Thomas Mangione, and Joseph J. Fins


Objective:  Although patients exercise greater autonomy than in the past, and shared decision making is promoted as the preferred model for doctor-patient engagement, tensions still exist in clinical practice about the primary locus of decision-making authority for complex, scarce, and resource-intensive medical therapies: patients and their surrogates, or physicians. We assessed physicians’ attitudes toward decisional authority for adult venoarterial extracorporeal membrane oxygenation (VA-ECMO), hypothesizing they would favor a medical locus.


Design, Setting, Participants: A survey of resident/fellow physicians and internal medicine attendings at an academic medical center, May to August 2013. 


Measurements: We used a 24-item, internet-based survey assessing physician-respondents’ demographic characteristics, knowledge, and  attitudes regarding decisional authority for adult VA-ECMO. Qualitative narratives were also collected. 


Main Results: A total of 179 physicians completed the survey (15 percent response rate); 48 percent attendings and 52 percent residents/fellows. Only 32 percent of the respondents indicated that a surrogate’s consent should be required to discontinue VA-ECMO; 56 percent felt that physicians should have the right to discontinue VA-ECMO over a surrogate’s objection. Those who self-reported as “knowledgeable” about VA-ECMO, compared to those who did not, more frequently replied that there should not be presumed consent for VA-ECMO (47.6

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.

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In The Journals – November by Christine Sargent

Hello trusty readers. Check out November’s haul for “In The Journals,” and be sure to check out the special issue of Science, Technology, and Human Values: Feminist Postcolonial Technosciences.

 

American Ethnologist:

Memory, body, and the online researcher: Following Russian street demonstrations via social media (open access)

Patty A. Gray

The Moscow street demonstrations of 2011–12 were the largest public gatherings in Russia since the collapse of the Soviet Union. They were also the largest-ever gathering of Russians on social media. While using the Internet to follow such large-scale social movements remotely, researchers experience social media as a context in which anthropology happens. They may think about “being there” in new ways that shift their focus to their own processes of memory making and sense of bodily presence. Experiencing and remembering social media in the body challenges the distinctions we might otherwise make between virtual and physical encounters.

Royal pharmaceuticals: Bioprospecting, rights, and traditional authority in South Africa

Christopher Morris

The translation of international biogenetic resource rights to a former apartheid homeland is fostering business partnerships between South African traditional leaders and multinational pharmaceutical companies. In the case of one contentious resource, these partnerships are entrenching, and in some instances expanding, apartheid-associated boundaries and configurations of power. The state and corporate task of producing communities amenable to biodiversity commercialization and conservation is entangled with segregationist laws and spatial planning. Rather than exclusion and the closure of ethnic boundaries, resource rights in this context foreground forced enrollment and the expansion of indigenous group-membership as modes of capitalist accumulation in an extractive economy.

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.

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Gattaca validated

In the made-for-bioethics movie Gattaca, when the main character Vincent is born, a nurse in the delivery room draws a drop of his blood, places it in the nifty instant genetic analyzer, and intones, “Heart disorder: 99% probability. Early fatal potential: life expectancy 30.2 years.” (Spoiler alert!) However, Vincent doesn’t let this genetic version of a horoscope control his life, but goes on to beat… // Read More »

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.

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Routledge Companion to Philosophy of Medicine

Now available:  the Routledge Companion to Philosophy of Medicine.  This 48 chapter volume is a comprehensive guide to topics in the fields of epistemology and metaphysics of medicine.

PART I: GENERAL CONCEPTS
The concept of disease (Dominic Sisti and Arthur Caplan)
Disease, illness, and sickness (Bjorn Hofmann)
Health and wellbeing (Daniel Hausman)
Disability and normality (Anita Silvers)
Mechanisms in medicine (Phyllis Illari)
Causality and causal inference in medicine (Julian Reiss)
Frequency and propensity: The interpretation of probability in causal models for medicine (Donald Gillies)
Reductionism in the biomedical sciences (Holly Andersen)
Realism and constructivism in medicine (Jeremy R. Simon)

PART II: SPECIFIC CONCEPTS
Birth (Christina Schuees)
Death (Steven Luper)
Pain and suffering (Valerie Gray Hardcastle)
Measuring placebo effects (Jeremy Howick)
The concept of genetic disease (Jonathan M. Kaplan)
Diagnostic categories (Annemarie Jutel)
Classificatory challenges in psychopathology (Harold Kincaid)
Classificatory challenges in physical disease (Mathias Brochhausen)

PART III: RESEARCH MEDICINE
(a) Evidence in Medicine
The randomized controlled trial: internal and external validity (Adam La Caze)
The hierarchy of evidence, meta-analysis, and systematic review (Robyn Bluhm)
Statistical evidence and the reliability of medical research (Mattia Andreoletti & David Teira)
Bayesian versus Frequentist clinical trials (Cecilia Nardini)
Observational research (Olaf Dekkers & Jan Vandenbroucke)
Philosophy of epidemiology (Alex Broadbent)
Complementary/alternative medicine and the evidence requirement (Kirsten Hansen & Klemmens Kappel)
b. Other Research Methods
Models in medicine (Michael Wilde & Jon Williamson)
Discovery in medicine (Brendan Clarke)
Explanation in medicine (Mael Lemoine)
The case study in medicine (Rachel Ankeny)
Values in medical research (Kirstin Borgersen)
Outcome measures in medicine (Leah McClimans)
Measuring harms (Jacob Stegenga)
Expert consensus (Miriam Solomon)

PART IV: CLINICAL METHODS
Clinical judgment (Ross Upshur & Benjamin Chin-Yee)
Narrative medicine (Danielle Spencer)
Medical decision making: diagnosis, treatment, and prognosis (Ashley Graham Kennedy)

PART V: VARIABILITY AND DIVERSITY
Personalized and Precision Medicine (Alex Gamma)
Gender in Medicine (Inmaculada de Melo Martin & Kristin Intemann)
Race in Medicine (Sean Valles)
Atypical bodies in medical care (Ellen Feder)

PART VI: PERSPECTIVES
The biomedical model and the biopsychosocial model (Fred Gifford)
Models of mental illness (Jacqueline Sullivan)
Phenomenology and hermeneutics in Medicine (Havi Carel)
Evolutionary Medicine (Michael Cournoyea)
Philosophy of Nursing: caring, holism and the nursing role(s) (Mark Risjord)
Contemporary Chinese medicine and its theoretical foundations (Judith Farquhar)
Double truths and the postcolonial predicament of Chinese medicine (Eric Karchmer)
Medicine as a commodity (Carl Elliott)

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.

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What is the risk?

To communicate about genetic risk with patients, we need to know how people think about risk and that experts and people in general often think differently.

A common feature, however, is this: Risk has to do with future adverse events. We talk about the risk of getting sick. But we rarely talk about the risk of getting well. We must then imagine people who value their disease (perhaps to avoid enrollment in an occupation army).

The expert’s concept of risk presupposes the negative value, but does not delve into it. It focuses on the probability that the unwanted event will happen (and how certain/uncertain the probability is).

For patients, however, the value aspect probably is more in focus. A couple learning about a 25% risk of having a child with a certain disability probably considers how bad such impairment would be: for the child and themselves. Maybe it isn’t so bad? Perhaps there is no great “risk” at all! They evaluate the risk scenario rather than calculate the probability.

How can we understand this value aspect, which risk presupposes and patients ponder? Ulrik Kihlbom at CRB asks the question in an article in the Journal of Risk Research.

Kihlbom describes two common ways of understanding value. The first is in terms of preferences. People have different preferences. Most prefer health before sickness, but occasionally someone may prefer disease. Value lies in satisfying these preferences, whatever they are. There is then only one value: preference satisfaction. The problem is that we can object that these preferences are not always reasonable or well informed.

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.

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Racial Biases in Face Judgment- When You “Look” Criminal

By Carlie Hoffman
Image courtesy of Pixabay
Racial bias can, and often does, occur in several elements of the criminal justice process, including on initial police contact, during eye-witness identification, and in jurors’ decisions. This disparity of how people are treated throughout the justice system is likely influenced by the criminal black male stereotype that pervades our American culture (1). Some propose that this stereotype originated in the slavery and post-slavery eras, with the onset of Jim Crow laws and other post-slavery codes that instigated segregation and also sanctioned racially-biased punishments for blacks, and especially for black males. Racially-biased punishments are still present today, with a 2015 article in Slate magazine citing that black Americans are more likely to have their cars searched, to be arrested for drug use, to be jailed while awaiting a trial, and to serve longer sentences for the same offense as white Americans.
The presence of racial bias in the criminal justice system is irrefutable, and investigation into the elements fueling this bias has recently moved into the realm of neuroscience. In last month’s Neuroethics and Neuroscience in the News talk, Dr. Heather Kleider-Offutt from Georgia State University explained that not all black men are stereotyped in the same way. Instead, certain black men are subject to a higher degree of negative bias than other black men, and inclusion in this select subgroup is based on face-type and not skin color alone.

What is this face-type that engenders such a high degree of negative bias? In her article, “Black Stereotypical Features: When a Face-Type Can Get You in Trouble,” Kleider-Offutt stated that research participants judged faces with so-called “afro-centric” or “stereotypic” features as being more threatening than faces with non-stereotypic, or “atypical” black features.

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.

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Victims, Vectors and Villains? Are those who opt out of vaccination morally responsible for the deaths of others?

Guest Post: Euzebiusz Jamrozik, Toby Handfield, Michael J Selgelid

 Paper: Victims, vectors and villains: are those who opt out of vaccination morally responsible for the deaths of others?

Who is responsible for the harms caused by an outbreak for vaccine preventable disease?

Are those who opt out of vaccination and transmit disease responsible for the resultant harms to others?

Suppose that health care systems make vaccines widely available and easily affordable–but some choose not to be vaccinated, resulting in an outbreak. If the outbreak only affected those who could have been safely and effectively vaccinated, but nonetheless opted out, then we might say that those who become infected consented to the risks involved and are thus responsible for their own illness. What should we think, however, about scenarios where harm occurs to those who cannot be safely or effectively vaccinated – e.g. vulnerable groups such as infants and the immunosuppressed? These groups are often at the highest risk of severe harm, and depend upon herd immunity (resulting from high vaccination rates) to protect them from vaccine-preventable infections. Members of such groups bear the burden of others’ freedom to opt out of vaccination, and this can cost them their lives. In 2015, for example, an immunosuppressed woman died in the United States during a measles outbreak made possible by a lapse in local vaccination rates[1].

Our recent article in the Journal of Medical Ethics argues that imposing risks of infection on others without good justification is morally blameworthy–and that individuals who opt out of vaccination are thus morally responsible for resultant harms to others.

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.

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Guest Post: Mind the accountability gap: On the ethics of shared autonomy between humans and intelligent medical devices

Guest Post by Philipp Kellmeyer

* Note: this is a cross-post with the Journal of Medical Ethics Blog.

Imagine you had epilepsy and, despite taking a daily cocktail of several anti-epileptic drugs, still suffered several seizures per week, some minor, some resulting in bruises and other injuries. The source of your epileptic seizures lies in a brain region that is important for language. Therefore, your neurologist told you, epilepsy surgery – removing brain tissue that has been identified as the source of seizures in continuous monitoring with intracranial electroencephalography (iEEG) – is not viable in your case because it would lead to permanent damage to your language ability.

There is however, says your neurologist, an innovative clinical trial under way that might reduce the frequency and severity of your seizures. In this trial, a new device is implanted in your head that contains an electrode array for recording your brain activity directly from the brain surface and for applying small electric shocks to interrupt an impending seizure.

The electrode array connects wirelessly to a small computer that analyses the information from the electrodes to assess your seizure risk at any given moment in order to decide when to administer an electric shock. The neurologist informs you that trials with similar devices have achieved a reduction in the frequency of severe seizures in 50% of patients so that there would be a good chance that you benefit from taking part in the trial.

Now, imagine you decided to participate in the trial and it turns out that the device comes with two options: In one setting, you get no feedback on your current seizure risk by the device and the decision when to administer an electric shock to prevent an impending seizure is taken solely by the device.

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.

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Is immortality just a pipe dream?

Jeanne Calment, our oldest 

An article in Nature has cast a wet blanket on the dreams of immortality researchers. An analysis of global demographic data by researchers at Albert Einstein College of Medicine suggests that the limit to human lifespan is about 125 years. Maximum lifespans kept rising until the 1980s, but they seem to have hit a plateau at about 120. The longest-lived person on record is Jeanne Calment, a French woman who died in 1997 at the age of 122 years, 164 days. The probability of a person celebrating her 126th birthday in any given year is less than 1 in 10,000.

The paper, which was based on two international lists of the world’s oldest people, has created a controversy. On statistical grounds, it was dismissed as “a travesty” by German demographer James Vaupel. And gerontologist Aubrey de Grey, who has been working for years on rejuvenation biotechnologies, told Nataure News: “The result in this paper is absolutely correct, but it says nothing about the potential of future medicine, only the performance of today’s and yesterday’s medicine.”

De Grey believes that it is possible for people to be effectively immortal – or to live long enough so that they are killed by a bus rather than by old age. He envisages lifespans of over 1000 years. Other scientists are lobbying to have ageing classified as a disease rather than as a life event. In other words, death would be treated as a medical failure than as a something natural and expected.

Immortality is an obsession in Silicon Valley.

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.