Tag: reporting

Bioethics Blogs

Moral panic in the intellect

Moral panic develops intellectually. It is our thoughts that are racing. Certain mental images make such a deep impression on us that we take them for Reality, for Truth, for Facts. Do not believe that the intellect is cold and objective. It can boil over with agitated thoughts.

This is evident in bioethics, where many issues are filled with anguish. Research information about cloned animals, about new techniques for editing in the genome, or about embryonic stem cell research, evoke scary images of subversive forms of research, threatening human morality. The panic requires a sensitive intellect. There, the images of the research acquire such dimensions that they no longer fit into ordinary life. The images take over the intellect as the metaphysical horizon of Truth. Commonplace remarks that could calm down the agitated intellect appear to the intellect as naive.

A science news in National Geographic occasions these musings. It is about the first attempt in the United States to edit human embryos genetically. Using so-called CRISPR-Cas9 technique, the researchers removed a mutation associated with a common inherited heart disease. After the successful editing, the embryos were destroyed. (You find the scientific article reporting the research in Nature.)

Reading such research information, you might feel anxiety; anxiety that soon takes possession of your intellect: What will they do next? Develop “better” humans who look down on us as a lower species? Can we permit science to change human nature? NO, we must immediately introduce new legislation that bans all genetic editing of human embryos!

If the intellect can boil over with such agitated thoughts, and if moral panic legislation is imprudent, then I believe that bioethics needs to develop its therapeutic skills.

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

In the Journals – August 2017 by Livia Garofalo

Here is the article round-up for August, put together in collaboration with Ann Marie Thornburg.  There is a special issue section of Social Science and Medicine out this month on Austerity, Health, and Wellbeing (abstracts below). Also of note is a recent ‘Takes a Stand’ statement on the End of AIDS published in Global Public Health by Nora Kenworthy, Richard Parker, and Matthew Thomann. You can take advantage of the article being temporarily free access and on early view here. Enjoy!

 

Cultural Anthropology (Open Access)

Tangles of Care: Killing Goats to Save Tortoises on the Galápagos Islands

Paolo Bocci

If calls to care for other species multiply in a time of global and local environmental crisis, this article demonstrates that caring practices are not always as benevolent or irenic as imagined. To save endemic tortoises from the menace of extinction, Proyecto Isabela killed more than two hundred thousand goats on the Galápagos Islands in the largest mammal eradication campaign in the world. While anthropologists have looked at human engagements with unwanted species as habitual and even pleasurable, I discuss an exceptional intervention that was ethically inflected toward saving an endemic species, yet also controversial and distressing. Exploring eradication’s biological, ecological, and political implications and discussing opposing practices of care for goats among residents, I move past the recognition that humans live in a multispecies world and point to the contentious nature of living with nonhuman others. I go on to argue that realizing competing forms of care may help conservation measures—and, indeed, life in the Anthropocene—to move beyond the logic of success and failure toward an open-ended commitment to the more-than-human.

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

End-of-Life Healthcare Sessions at ASBH 2017

The 2017 ASBH
conference
 in October 2017 includes over 400 workshops, panels, and
papers in bioethics and the health humanities.  Here are ones that pertain
to end-of-life issues.


THURSDAY, OCTOBER 19


THU 1:30 pm:  End-of-Life Care and Decision-Making in the ICU – Limited
English Proficiency as a Predictor of Disparities (Amelia Barwise)


Importance: Navigating choices in predominantly English-speaking care settings
can present practical and ethical challenges for patients with limited English
proficiency (LEP). Decision-making in the ICU is especially difficult and may
be associated with disparities in health care utilization and outcomes in critical
care. 


Objective: To determine if code status, advance directives, decisions to limit
life support, and end-of-life decision-making were different for ICU patients
with LEP compared to English-proficient patients. 


Methods: Retrospective cohort study of adult ICU patients from
5/31/2011-6/1/2014. 779 (2.8%) of our cohort of 27,523 had LEP. 


Results: When adjusted for severity of illness, age, sex, education, and
insurance status, patients with LEP were less likely to change their code
status from full code to do not resuscitate (DNR) during ICU admission (OR,
0.62; 95% CI, 0.46-0.82; p


Conclusion: Patients with LEP had significant differences and disparities in
end-of-life decision-making. Interventions to facilitate informed
decision-making for those with LEP is a crucial component of care for this
group.


THU 1:30 pm:  “But She’ll Die if You Don’t!”: Understanding and
Communicating Risks at the End of Life (Janet Malek)


Clinicians sometimes decline to offer interventions even if their refusal will
result in an earlier death for their patients. For example, a nephrologist may
decide against initiating hemodialysis despite a patient’s rising creatinine
levels if death is expected within weeks even with dialysis.

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: Withdrawing life-prolonging treatment in the patient’s best interests: The implications of Briggs

Guest Post: Jenny Kitzinger, Celia Kitzinger and Jakki Cowley

Paper:  When ‘Sanctity of Life’ and ‘Self-Determination’ clash

In a recent landmark judgment in the Court of Protection (Briggs v Briggs [2016] EWCOP 53), a judge authorised withdrawal of life-prolonging treatment from a minimally conscious patient with potential for further recovery.  Our article in Journal of Medical Ethics addresses the implications of this judgment, highlighting its potential to strengthen compliance with the Mental Capacity Act 2005, and the delivery of person-centred care.

How this will work in practice is another question.

We have supported families (CK and JK) and represented patients (JC) in a series of cases – several of which have reached court – in which families sought treatment withdrawal and doctors refused.  We know many families who believe that their brain-injured relative would not want to receive on-going life-prolonging interventions.  It usually takes years for families to come to this view and even longer to communicate it to doctors. Some health care professionals can be dismissive – or even hostile – when families speak up.   Even when doctors acknowledge that a patient will never regain consciousness, some have ethical objections to withdrawing treatment from a clinically stable patient.  It feels, they say, like ‘euthanasia’.

An ethical imperative to give treatment is experienced even more acutely, by some doctors, when the patient may make some degree of ‘progress’ – perhaps recovering consciousness and the ability to interact with others.  The treating clinician in the Briggs case was firmly of the view that it would be unethical to withdraw treatment from a patient whose level of consciousness might improve over time. 

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 Back Story on “Can cancer researchers accurately judge whether preclinical reports will reproduce?

How well can researchers accurately predict whether high profile preclinical findings will reproduce? This week in PLoS Biology, STREAM reports the result of a study suggesting the answer is “not very well.” You can read about our methods, assumptions, results, claims, etc. in the original report (here) or in various press coverage (here and here). Instead I will use this blog entry to reflect on how we pulled this paper off.

This was a bear of a study to complete. For many reasons. Studying experts is difficult- partly because, by definition, experts are scarce. They also have limited time. Defining who is and who is not an expert is also difficult. Another challenge is studying basic and preclinical research. Basic and preclinical researchers do not generally follow pre-specified protocols, and they certainly do not register their protocols publicly. This makes it almost impossible to conduct forecasting studies in this realm. We actually tried a forecast study asking PI’s to forecast the results of experiments in their lab (we hope to write up results at a later date); to our surprise, a good many planned experiments were never done, or when they were done, they were done differently than originally intended, rendering forecasts irrelevant. So when it became clear the Reproducibility Project: Cancer Biology project was a go and that they were working with pre-specified and publicly registered protocols, we leapt at the opportunity.

For our particular study of preclinical research forecast, there was another challenge. Early on, we were told that the Reproducibility Project: Cancer Biology was controversial.

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 need for Christians to make distinctively biblical moral decisions

I am continuing to reflect on the recent CBHD conference. One of the paper presentations I attended was related to the role of Christian faith and the church in decisions about fertility treatments. Heather Prior and an associate are doing research on how Christian couples in their community make decisions about treatments for infertility including such things as IVF. In the preliminary results she was reporting they found that many of the churches that the couples in their study attended had statements about the use of reproductive technology, but that none of the couples dealing with infertility were aware of those statements. Few had sought any counsel on their decisions from their pastors or others in their church.

I find that concerning. In my interaction with Christian students I have become very concerned that even those with strong Christian faith tend to think about ethical issues using thought patterns they have absorbed from the surrounding culture rather than using distinctively biblical ways of thinking. I don’t think this is limited to students, and this study suggests that it is not. The culture that we live in believes that people should make their own decisions about how they live based on how they feel about any decisions they need to make. It also says that those around them should affirm whatever they decide. I fear that Christians are taking on that same attitude. If we think like the world around us, we will make decisions on things such as reproductive technology based on what we desire and how we feel and expect the church to affirm whatever decision we make.

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

California End of Life Option Act – 2016 Data Report

This week, the California Department of Public Health (CDPH) released its Annual Report on the End of Life Options Act.


The Act, which became law June 9, 2016, allows qualified California terminally ill adults to obtain and self-administer aid-in-dying drugs. The Act requires CDPH to provide annual reports, including information on the number of prescriptions written and the number of known individuals who died using aid-in-dying drugs. Additionally, the report includes demographic information on these individuals, including age and underlying illness.


In this first report, for the partial year June 9 – December 31, 2016, 191 individuals received aid-in-dying drugs under the EOLA, and 111 people died following ingestion of the prescribed drugs. Of the 111 individuals, 87.4 percent were more than 60 years of age, 96.4 percent were insured and 83.8 percent were receiving hospice and/or palliative care.


Data in the report comes from EOLA-mandated physician reporting forms and California death certificates. The first report covers the period from the effective date of the law to the end of year (June 9, 2016 – December 31, 2016) and subsequent reports will be for full calendar years.

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

What’s At Stake in Speculation? by Matthew Wolf-Meyer

We’ve long been thinking about health, well-being, illness, sickness, and disease, in relation to risk. That things might not be maintained at their present levels, either individually, among our cared-for, or socially, is not something new, even if we’ve entered a period of intensification, with calls to ‘repeal and replace’ the Affordable Care Act, and the slow, often subtle chipping away at social safety net policies in the United States and throughout the North Atlantic in the spirit of austerity and for the sake of freedom. What might have been primarily personal and interpersonal concerns about health and disease have also expanded to include the environment and the species, as we continue to think through the Anthropocene and its consequences for exposures to environmental dangers – toxins and radiation foremost among them – and the spread of once localized diseases to the global stage, as the recent zika outbreak raised, and Ebola recurrently threatens. The intensification and generalization of risk may very well entail the intensification and generalization of speculation; what are our individual and collective possible futures? And what better way to confront our possible futures than through media that explicitly engages with the future, speculative and science fiction?

Is speculation fundamental to life itself? That’s the question that Steve Shaviro seeks to answer in his recent Discognition. Shaviro argues that sentience itself – which we might see operating in computer programs, plants, slime mold, and emergent technologies – is founded on the existence of the ability to speculate, to anticipate and plan. We may not be able to infer how speculation works for a sentient computer program or a slime mold, yet, they depend upon an ability to forecast, to imagine what may come next, so as to act appropriately in advance.

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

Zika in India and Public Health Ethics

Chhanda Chakraborti argues for a more ethically aware public health response to the to Zika in India.

__________________________________________

On May 27, 2017, Indian newspapers reported that the WHO confirmed three cases of Zika virus in Ahmedabad, Gujarat, India. The first case, in November 2016, involved a 34-year-old woman, who tested positive for Zika after she delivered a baby at B. J. Medical College. The second case, in January 2017, involved a a 22-year-old woman in her 37th week of her pregnancy. The third case, in February 2017, involved a 64-year-old man who was identified during a random monitoring and surveillance activity conducted by the B. J. Medical College.

In February 2016, the Minister of Health proclaimed that India’s Ministry of Health and Family Welfare had adopted several actions and countermeasures to prevent the spread of Zika. However, the alerts and guidelines about Zika, that were created in consultation with the World Health Organization (WHO), only became publicly available on the Ministry’s website after media reports of Zika in India. In May 2017, the WHO asserted that India’s Ministry of Health has taken the necessary steps to address the situation. These steps include sharing national plan and guidelines on Zika with the States, setting up an Inter-Ministerial task force, displaying Zika- related information for travellers in the airports.

B. J. Medical College, Ahmedabad

Beyond the media reports and the statements issued by the Ministry and the WHO, there has been little public discussion about Zika in India. The local neighbourhood Ahmedabad, as well as the Ahmedabad Municipal Corporation (which is responsible for public health in the area) reportedly were unaware of the Zika cases until these were publicized by the media. In sharp contrast, there

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

Jeremy Howick, The Philosophy of Evidence-Based Medicine, Wiley-Blackwell, 2011

The idea that prescribing physicians should be guided by the most reliable scientific evidence seems obvious, but the actual methodology of evidence-based medicine was only introduced in the early 1990s by an international group of clinicians and researchers led by Gordon Guyatt. Since then it has provided a new paradigm for the scientific foundation of medicine and has influenced other disciplines outside of medicine, for example, evidence-based psychotherapy, science and government. The novel concept of evidence-based medicine is based on hierarchies of evidence from opinions of respected authorities, mechanistic reasoning (pathophysiologic rationale), and reports of expert committees at the bottom to various levels of observational studies and finally to randomized clinical trials (RCTs) at the apex of the pyramid. Since RCTs provide the most rigorous testing of therapies, they are the gold standard. When treatments long believed to be safe and effective are subjected to RCTs, many turn out to be as useless as the quackery of snake oil or as harmful as mercury. So, attention to RCTs as the evidence informing clinical judgment and practice is perhaps analogous to results of rigorous experiments in physics which turn out to be very different from our intuitions. Everyone, it seems, is on the bandwagon, from medical societies and pharmaceutical companies to general practitioners and surgeons, in the quest for an evidence-based practice.

Since evidence-based medicine was conceived with the practical aim of improving the efficacy of medicine, it does not appear that there is much of philosophical interest in the concept until one raises the epistemological question, as Jeremy Howick does in this book: What is the evidence for evidence-based medicine philosophy of evidence (9)?

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.