Tag / bioethics

by crmayes

Rise & decline of bioethics libraries

Libraries played an important role in the emergence of bioethics in Australia. They made difficult-to-access resources available and provided a space for discussion and debate. Over the past decade these bioethics libraries have either been enfolded into larger institutional collections or moth-balled as a legacy of a previous generation.

The rise and decline of these libraries says something about the changing nature of bioethics, but also the way information is collected, accessed, and distributed.

While there are a number of examples of these libraries across Australia, I will mention two here: the Tom Ludowici Bioethics Collection at the Sydney Adventist Hospital and the Queensland Bioethics Centre at the Mater Hospital Brisbane.

Tom Ludowici Bioethics Collection, Sydney Adventist Hospital

Perhaps the biggest surprise of my research so far has been what is now known as the Tom Ludowici Bioethics Collection at the Sydney Adventist Hospital in Wahroonga, Sydney.

Tom Ludowici Bioethics Collection

The library boasts over 7, 500 physical bioethics books as well as numerous journal subscriptions and conference proceedings. By contrast the University of Sydney has 5, 518 bioethics books or ebooks (the latter making up a significant proportion of the total number).

I was surprised to discover this library because I studied and taught bioethics in Sydney and spent my teen years not too far from this hospital. Yet I never heard of this extraordinary bioethics library.

I stumbled on the collection via Trove. Whenever I would search for an early bioethics document Avondale College Library, which now houses the library, was almost always among the libraries listed as holding a copy.

In 1987, Dr Bert Clifford (CEO of the Sydney Adventist Hospital 1968-1990) established the Centre for Christian Ethics along with Dr Tom Ludowici (Senior Chaplain). In their proposal to the Sydney Adventist Hospital board they listed the Resource Library as the first of six activities, with the aim of developing ‘an outstanding collection of bioethical books, periodicals, audio and visual materials and other research resources’. They proposed an initial budget of $8000 to purchase books. On a recent visit I spoke with Michael Rigby (head librarian) who said he still has a budget line for purchasing bioethics books.

The collection continues to grow, but who uses it?

Queensland Bioethics Centre

The Queensland Bioethics Centre was established in 1981 by the Archdiocese of Brisbane. Its role was to be a ‘point of contact for Catholic Hospitals, Doctors, Nurses or others who wish refer to medico moral matters for research and discussion.’ A key part of this role was the library.

QBE 18 Clarence

18 Clarence St, South Brisbane. A cottage next to the Mater.

In establishing the library, Sr Regis Mary Dunne, the founding director, sought advice from the Hastings Center (New York) and Kennedy Centre (Georgetown) about texts to purchase and method of cataloging.*

Unlike academic bioethics centres such as at Monash University, the QBC was explicitly focused at the lay public and medical staff. While the library was for research, it was research in the sense of individual and community groups trying to educate themselves about current bioethical issues.

QBE

The QBC’s location in South Brisbane.

Furthermore, the QBC library was setup as a place for communal inquiry and discussion. In an interview with Sr Regis Mary Dunne, she recalled the importance of the location in South Brisbane. Not only was it near the hospital, but during the 1980s this was an area occupied by the working-poor, sex-workers, Aboriginal communities, and drug-users – many of the groups marginalised in Bjelke-Petersen’s Queensland.

The QBC was able to function as a resource and meeting-place for these diverse communities and would run workshops on AIDS, Human Reproductive Technologies, and other topics. They also ran a “Women’s Bioethics Study Group” and offered personal counseling.

By the mid-1990s the centre had over 6000 books, plus 20,000 articles organised by topic in manila folders.

Changing needs and roles

These libraries continue to exist, but in different locations and serving different roles. One of the major factors behind these changes has been the rise of the internet and availability of information online. However, the changing roles of these libraries cannot be reduced to the internet. Institutional arrangements also altered.

Since the mid-1990s the Mater was questioning the viability of the QBC occupying its cottage. One of the main sticking points was that the cottage needed repairs to comply with Mater OH&S requirements. Neither the Archdiocese or the Mater seemed wiling or able to afford these repairs. In November 2007 the QBC moved from the cottage in South Brisbane to the leafy suburb Ashgrove, where it was located in St Finbarr’s Church. The library continued but no longer in an easily accessible location for medical staff or the wider community.

In 2018 the QBC moved again to become part of the Australian Catholic University (ACU), Banyo. This move brought the centre into context of higher education and research. This is quite different from its initial focus on the lay community and medical staff. In terms of the library, this move has meant the bioethics library has been enfolded into the ACU library at Brisbane. This means that access, particularly to online journals, is limited to those with library card and login privileges.

In the case of the Tom Ludowici Collection, it remains a separate bioethics library. However, it is now part of  Avondale College. Further, the bioethics library used to be housed in a location between the hospital and the carpark, which was convenient for doctors and medical staff to drop by to-and-from work. It is now physically located on the other side of the hospital, which has reduced the number of hospital staff using the library.

SAN

So what?

At the start I said the rise and decline of these libraries says something about the changing nature of bioethics, but also the way information is collected, accessed, and distributed.

I need to think about this further, but my initial response would be that the internet has obviously changed the way people access bioethical information and also find communities to discuss ideas with. Libraries were not only about providing access to resources, but communities with which to debate and interpret these resources and their relation to specific medical and moral issues of the day. The internet has supplanted this role, but as mentioned I don’t think these changes can simply be reduced to the internet.

I think there has also been a shift in the bioethical issues facing communities today. In the 1980s HIV/AIDS and reproductive medicine were unknown and, for many people, frightening developments. This created an imperative to seek out information and reliable people to discuss it with.

Today, it is arguable that there aren’t equivalent issues that are as widespread or novel. For example, commercial surrogacy or stem cell therapies raise a number of medical and moral questions, yet they tend to be technical and applicable to a small section of society. Of course, debate continues over “big issues” such as abortion and euthanasia laws, and fora for community-based discussion do pop-up from time-to-time, but nothing as lasting as a centre with a library and staff to instigate and facilitate discussion.

Anyway, I need to think more about all of this, and also the sociopolitical role of libraries outside of formal educational settings.

 

 

*Both the QBC and the Tom Ludowici collection adopted the the idiosyncratic Georgetown classification system.

IMG_0468

 

by crmayes

Whiteness as a bioethical problem

Below is a link to a pdf of my keynote at the Australasian Association for Bioethics and Health Law conference in Townsville, 22nd-25th September, 2018.

Link: Mayes_Whiteness_as_a_bioethical_problem_AABHL_2018

AABHL 2018

 

Abstract

In March 2018 the Nursing and Midwifery Board of Australia (NMBA) released new editions of their codes of conduct, standards of practice, and code of ethics. In the glossary section, “cultural safety” was described (among other things) as providing “a de-colonising model of practice based on dialogue, communication, power sharing and negotiation, and the acknowledgment of white privilege”. Conservative media commentators reacted by claiming that white nurses were being asked to apologise for being white prior to caring for Aboriginal and Torres Strait Islander patients. Media personality Andrew Bolt called the code a new form of racism and Senator Corey Bernardi characterized the situation as a “new medical Marxism”. These responses serve to illustrate the sensitivity some sections of Australian society have to examining whiteness and white privilege in general, and health institutions in particular.

In recent years, whiteness studies has emerged as a way of examining race relations and the effects of racism by focusing on assumptions that “white” occupies a position of normalcy and neutrality. Black feminist scholars such as Audre Lourde have been significant in turning the critical focus from the racialised other to the institutions, beliefs, systems, and practices that do the work of racialising, while reinforcing white privilege. In Australia, this has meant that instead of focusing exclusively on the injustices suffered by Aboriginal and Torres Strait Islander peoples, the whiteness analytic lens allows scholars such as Irene Watson and Aileen Moreton-Robinson to draw attention to the material conditions, histories, ideas, and practices that make such racialised injustices possible, and even normal.

This paper explores the historical legacy and contemporary implications of whiteness in the provision of health care, health-related research, and bioethics itself to ask: If biomedicine and bioethics are implicated in the privileging of whiteness, is it possible to begin a process of decolonisation and move towards a postcolonial bioethics?

by crmayes

Bioethics, a humble servant to the queen?

Image taken from page 25 of 'The Men in the Moon: or, the 'Devil to pay.' With thirteen cuts [by George Cruikshank], etc. [A satirical poem-chiefly in reference to the proceedings of Messrs Cobbett, Hunt, and others.]'

The role of bioethics has been questioned in an op-ed by the silver-maned experimental psychologist Steven Pinker. Pinker’s piece has generated some heated online responses. While some commentators call for context and nuance in reading Pinker’s piece, others read it in the context of the turf wars over the role of science and the humanities in the modern production of knowledge. Pinker has held a lead role with #TeamScience in these disputes. Until recently, bioethics has been able to negotiate these wars by trying to get along with everyone. However, Pinker’s recent call for bioethics to “Get out of the way” and allow medical science to do its life-saving thing has publicly questioned whether bioethics is helping or hindering medical science.

A questionable lineage

In the not so distant past, theology and philosophy both laid claim to the title “queen of the sciences” – a claim that not many today would grant either. In terms of institutional and financial support, both are in the descent (see, see). This is not to say that we should smooth the pillow and send them off into the quiet night. Both will continue their important work, but many of the hangers-on will continue to retreat to other parties. Vice-Chancellors and politicians won’t be launching books or holding soirees to celebrate a new breakthrough in Hegelian scholarship, for instance.

While the social and economic capital of theology and philosophy declines, their child, Bioethics, is perhaps in a more opportunistic optimistic position. Since the 1970s bioethics has found a role in service of the new queen – medicine. Medicine fulfills the role once held by theology and philosophy in ordering the human sciences.* The importance of medicine and medical research in the modern university is unquestioned. In the same way theology was once essential to Oxford University; medical research has become essential for a major research institution to be taken seriously. Its role is more than this however. Medicine is not only greatly valued, but determines the value of other human sciences. The closer a discipline’s proximity to medicine and the goal of securing human health and preventing curing disease (see), then the greater the value of that discipline.

Bioethics has been placed, or placed itself, within and alongside medical research.

In the 1970s, philosophers and theologians offered initial responses to public scandals in research and clinical practice. For example, Tuskegee syphilis experiments in the US, the experiments on women with cervical cancer at New Zealand’s National Women’s Hospital, or the death of Jesse Gelsinger; who died while participating in a clinical trial at the University of Pennsylvania. Events such as these led to acceptance that ethical oversight of medical research and practice is essential. Ethics committees were established, and ethics education became standard for medical students and researchers. The success of these interventions has led Pinker to conclude that medical researchers have learned to behave and appropriate checks are now in place. Therefore the shackles of bioethics can be loosened.

Keeping medical research “in check” is only part of the story.

A role also opened up for bioethics centres and bioethicists to calmly communicate breakthrough medical research to anxious publics. In Australia, Monash University established the Monash Centre of Human Bioethics in 1980 with Peter Singer as Director. The initial role of the centre was to promote the rapidly advancing research in artificial reproductive technologies at Monash University. Alan Trounson, the former director of the Monash Centre for Early Human Development, recalls:

I had to sort myself out in the early days just like anyone who works in a new area involving something like human embryos. If we hadn’t had Peter Singer around in those days I think we might not have pursued some things to the extent that we have.

Singer, among others, helped further the research of Trouson and his colleagues by communicating to the public that the moral status of an embryo is not something to be concerned about and that so called “test-tube” babies are just fine.

Pinker believes that it is time for bioethics to “get out of the way”. However, rather than saying “stop”, a lot bioethicists have arguably greased the wheels of medical science and widened societal ethical boundaries to allow more and more research to be done. So perhaps in this case, what Pinker meant to say was not “get out of the way”, but “get in your place! Tell the public that editing genomes is not to be worried about because biomedical research is progressing and soon disease will be regressing”.

*This is not to suggest a neat linear progression from theology to philosophy to medicine. The effects of theology, for instances, are still very present in philosophy and medicine (and bioethics).

by crmayes

Continental Approaches in Bioethics (2015)

Hall, Melinda. C. (2015). “Continental Approaches in Bioethics.” Philosophy Compass 10(3): 161-172.

DOI: 10.1111/phc3.12202

Abstract

Bioethics influences public policy, scientific research, and clinical practice. Thinkers in Continental traditions have increasingly contributed scholarship to this field, and their approaches allow new insights and alternative normative guidance. In this essay, examples of the following Continental approaches in bioethics are presented and considered: phenomenology and existentialism; deconstruction; Foucauldian methodologies; and biopolitical analyses. Also highlighted are Continental feminisms and the philosophy of disability. Continental approaches are importantly diverse, but those I focus upon here reveal embedded models of individualized autonomy in medical discourses and encourage awareness of medicine’s normalizing edges, thereby drawing attention to lacunae in traditional bioethical frameworks.

by crmayes

Morally Indigestible Listicles: Food, Experts, and the Burden of Choice

Never Eat

The Sydney Morning Herald (via the Telegraph, London) has published another “no-nonsense-straight-shooting-science-based” listicle of the foods YOU SHOULD NEVER EAT AGAIN! These lists seem to appear at least once every week on some form of news website.

This current list is prefaced with references to recent British Medical Journal studies that turned upside down “everything we thought we knew about eating and drinking healthily”. Instead of saturated fats being “the killer”, it turns out carbohydrates are!

Put down that bacon & egg roll and get yourself a KFC Double-Down sandwich!

Surprisingly the article doesn’t question why these new claims have a stronger knowledge base than previous claims or how we can be sure that in a week there won’t be another “nutritional revolution” that will turn this all on its head and finger protein as Grandpa’s real killer.

Leaving aside the science-base of these claims – not to imply this is unimportant – what is most disturbing about these articles (and this article in particular) is the emphasis on individual food choices as the determining factor of health. “Expert” claims that “every bacon sandwich you eat knocks half an hour off your life” reinforce ideas that my heart disease or your diabetes are reducible to that sandwich or chocolate bar eaten six years ago.

When these factoids are spoken by folks in white coats during times of austerity cuts to health services there is a real danger of compounding already existing public health policy problems by pretending that structural influences can be addressed via a nice social marketing campaign or a Jamie Oliver TV show that teaches people how to cook, garden and “never eat those foods again”.

In the UK (where this article originated) David Cameron recently flagged that sick benefits may be cut from people who are obese and do not lose weight. The rationale for this idea is that obese people can lose weight simply by making “correct” and “healthy” food choices. However, according to Cameron, they aren’t making these choices because life is too good on benefits. Hence, cut the benefits and healthy food choices will be made.

While these listicle articles may be dismissed as “not too serious” or “a bit of fun”, they depend on and reinforce a moralistic and biopolitical perspective on the relation between food, choice and health. This perspective is often used to justify budget cuts to health services due to the expectation that health is simply a matter of individuals making the right choices.

In an article for Public Health Ethics, my colleague Donald B. Thompson and I argue that this perspective is morally and scientifically unjustified. Below is the introduction. If you’d like read the whole thing but the pay wall gets in the way send me an email.

Continue reading →

by crmayes

Bioethics, obesity and the harm principle

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Fat people should pay more to fly, because they weigh more and hence use more fuel.
Fat people can’t make good food choices so they should be coerced and stigmatized into making the right choice.
These and other spurious ideas are permitted to float around opinion pages of leading newspapers and journals because a) we think we have a fat people problem; b) shocking, blunt and simplistic solutions to complex problems are key ingredients to “click-bait”; and c) if we can reduce complex problems to economic calculations then we can pretend moralistic interventions into peoples lives are “neutral” because, hey it’s the raw numbers talking.
Anyway, in the below paper published this week I argue against Peter Singer and Dan Callahan’s attempts to justify direct interventions into the lives of fat people based on a simplistic use of the harm principle and a deep ignorance of empirical and public health research on obesity. Or as H.L. Mencken quipped, “For every human problem, there is a solution that is simple, neat, and wrong.”
If you can’t get beyond the paywall send me an email or message.

The Harm of Bioethics: A Critique of Singer and Callahan on Obesity

Abstract

Debate concerning the social impact of obesity has been ongoing since at least the 1980s. Bioethicists, however, have been relatively silent. If obesity is addressed it tends to be in the context of resource allocation or clinical procedures such as bariatric surgery. However, prominent bioethicists Peter Singer and Dan Callahan have recently entered the obesity debate to argue that obesity is not simply a clinical or personal issue but an ethical issue with social and political consequences.

This article critically examines two problematic aspects of Singer and Callahan’s respective approaches. First, there is an uncritical assumption that individuals are autonomous agents responsible for health-related effects associated with food choices. In their view, individuals are obese because they choose certain foods or refrain from physical activity. However, this view alone does not justify intervention. Both Singer and Callahan recognize that individuals are free to make foolish choices so long as they do not harm others. It is at this point that the second problematic aspect arises. To interfere legitimately in the liberty of individuals, they invoke the harm principle. I contend, however, that in making this move both Singer and Callahan rely on superficial readings of public health research to amplify the harm caused by obese individuals and ignore pertinent epidemiological research on the social determinants of obesity. I argue that the mobilization of the harm principle and corresponding focus on individual behaviours without careful consideration of the empirical research is itself a form of harm that needs to be taken seriously.

Keywords: obesity; Peter Singer; Dan Callahan; harm principle; public health

Mayes, C. (2015), The Harm of Bioethics: A Critique of Singer and Callahan on Obesity. Bioethics, 29: 217–221. doi: 10.1111/bioe.12089

by crmayes

Continental Philosophy and Bioethics: Part 1 – Challenges and Dissmissals

Both bioethics and continental philosophy are outliers of “mainstream” philosophy. However, their shared outlier status has not resulted in camaraderie but mutual suspicion, if not contempt. Brian Leiter describes bioethics as possessing a “dim reputation in academic philosophy”.[i] While bioethicists such as Daniel Callahan describe continental philosophy “as not philosophy at all”.[ii]

Perhaps the intention of these comments is to dismiss rather than challenge continental philosophy or bioethics, but I have taken them as a challenge. I am not interested in defining these disciplines or academic fields; especially as the work of philosophers such as Jürgen Habermas or Jeffrey Bishop demonstrates the artificial nature of the boundaries surrounding these classifications. However, there is a general bar or faculty room acceptance of Leiter’s characterization of bioethics and Callahan’s assessment of continental philosophy. Depending on philosophical predilections Leiter’s remark may have raised a smile or Callahan’s evaluation a smirk. As someone trying to simultaneously swim in the continental and bioethics streams I find these comments frustrating, yet acknowledge the pressing challenges issued in both.

The challenge issued to bioethics from philosophy, not just from Leiter but a host of others, can be summarized as: (i) bioethics is too close to industry (broadly construed); (ii) bioethics is philosophically limited; (iii) bioethics is philosophically monotonous.

The challenge issued to continental philosophy from bioethics, and again not just from Callahan, can be summarized as: (i) continental philosophy is too theory-laden; (ii) continental philosophy is too descriptive and lacks normative application; and (iii) continental philosophy cannot be translated into policy.

In response, I do not intend to merely defend these academic fields, but acknowledge the challenges and suggest that despite apparent opposition they can fruitfully support each other and produce important analytic insights and ethical engagements.

[i] Brian Leiter, “American Journal of Bioethics, Redux: Is this for real?” Leiter Reports: A Philosophy Blog, 2012, . [Accessed on December 3, 2012].

[ii] Daniel Callahan, The Roots of Bioethics: Health, Progress, Technology, Death  (New York: Oxford University Press, 2012): 9.