Ongoing 21-23 November of 2019, the Australasian Association of Bioethics and Health Law / New Zealand Bioethics Conference is spotlighting work by Māori thinkers. IJFAB Blog readers might want to look more closely at their work, which makes important contributions to interdisciplinary bioethics and philosophical bioethics. Short bios including links to a few of their pieces of work are below each of their images.
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The first highlighted theorist is Dr. Krushil Watene (PhD, MA) of the College of Humanities and Social Sciences at Massey University in New Zealand. Her work on how we get a very different result when we put the capability approach into cross-cultural conversation with Māori philosophies is worth taking a look at. The links provided here are only a few of Dr. Watene’s many pieces on the subject of justice, and on how Māori justice concepts can contribute to global justice theorizing. Her work also bears on environmental philosophy which has sweeping implications for health, and she works on Māori and Pasifika health and development policies.
The second highlighted theorist is Māui Hudson of the faculty of Māori and Indigenous Studies at the University of Waikato in New Zealand. Professor Hudson works on Māori research ethics, traditional medicine, the interface of Māori knowledge-making and western traditions of inquiry, and Māori health, among other topics.
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The Trump administration plans to limit the scientific and medical research that government agencies use when formulating public health policies, amidst protests from both scientists and physicians that this policy will undermine current scientific foundations for government legislation.
A new draft of the Environmental Protection Agency proposal, titled Strengthening Transparency in Regulatory Science, would require that scientists disclose all of their raw data, including confidential medical records, before the agency could consider an academic study’s conclusions. E.P.A. officials called the plan a step toward transparency and said the disclosure of raw data would allow conclusions to be verified independently.
The new regulations will make it more difficult to pass clean air and water laws because much research linking pollution to health issues relies on personal health information that is protected by confidentiality agreements with research participants. Potentially even more harmful, the new proposal could apply retroactively to current public health policies. Experts warn that studies we have relied on for decades, such as those that show mercury from power plants is harmful to brain development, may not longer be allowed as evidence once current public health regulations come up for renewal.
For instance, a groundbreaking 1993 Harvard University project that definitively linked polluted air to premature deaths, currently the foundation of the nation’s air-quality laws, could become inadmissible. When gathering data for their research, known as the Six Cities study, scientists signed confidentiality agreements to track the private medical and occupational histories of more than 22,000 people in six cities. They combined that personal data with home air-quality data to study the link between chronic exposure to air pollution and mortality.
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EDITOR’S NOTE: This Guest Blog comes to us from bioethicists Dr. Nathan Emmerich and Dr. Alexis Paton in response to a flurry of discussion over Sarah Franklin’s inquiry into bioethics in a recent issue of Nature. Alexis Paton is a Lecturer of Social Science Applied to Health with the SAPPHIRE group at the University of Leicester. She is a Trustee of the Institute of Medical Ethics, and the Chair of the Royal College of Physicians’ Committee on Ethical Issues in Medicine. Nathan Emmerich is Dr Nathan Emmerich is a Research Fellow in bioethics at the ANU College of Health and Medicine.
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In a recent essay for Nature, part of a series of editorials
marking the journal’s 150th anniversary, Professor Sarah Franklin suggested
that “[b]ioethics, once a beacon of principled pathways to policy, is
increasingly lost” (p.629). The tenor of her argument is
that bioethics is obsolete, and this certainly seems to be the way thatsome havetaken it. However, it is arguably the case
that such responses do little more than rush to the defense of only one facet
of bioethics, a multifaceted field. Thus, they do not accept what we see as
Franklin’s invitation to reflect upon the nature of bioethics, where it has
come from and where it might be going. More than this, elements of these
responses test the boundaries of propriety in scholarly debate, at least to our
ears. Indeed, in one or two places, we had found ourselves questioning whether
the same points would be made in the same way about a male author. If only for
the sake of brevity we shall leave this issue to one side.
A more
fruitful reading of Franklin’s essay emerges when one bears in mind that
bioethics is a broader endeavor than explicitly acknowledged by Franklin or apparently
presumed by those who have commented thus far. Consider the fact that, despite the
initial pronouncement quoted above, Franklin seems to demur from the hardline
of bioethics’ obsolescence saying that, like any other field, bioethics evolves
and that:
The field no longer relies on philosophically derived mandates codified into textbook formulas. Instead, it functions as a dashboard of pragmatic instruments, and is less expert-driven, more interdisciplinary, less multipurpose and more bespoke. (p.629)
If bioethics has indeed evolved in this way and, presumably, will continue to develop, how should we take Franklin’s suggestion that it is lost? It seems that the target of Franklin’s criticism is applied philosophically-based bioethics, which roots itself solidly in the philosophical tradition. The dominance of philosophy in bioethics was preeminent from the late 1970 until the late 1990s, and philosophy remains a significant component of the field today. This approach to bioethics is a form of applied philosophy or applied ethics, and it certainly seems to be the conception of bioethics that those responding to Franklin are anxious to defend.
IMAGE CREDIT: Screenshot from Nature’s website showing Franklin’s article and art by Señor Salme
It is, however, a mistake to think that this approach—which we might call philosophical bioethics or applied bioethics—amounts to or has ever amounted to the sum total of the field, even if some of its proponents often appear to suggest that it is, or perhaps, should be the case.
THE DEADLINE FOR ABSTRACT SUBMISSION to the Feminist Approaches to Bioethics Congress (and the World Congress of Bioethics) HAS BEEN EXTENDED TO MONDAY, NOVEMBER 11th, 11:59pm EST!
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I am very grateful to have recently taken on the role of Book Review Editor for the International Journal of Feminist Approaches to Bioethics. In this role, I will be frequently soliciting both books and reviewers for the journal and hope to find willing volunteers from the IJFAB audience and beyond.
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I’m a book lover, both professionally and personally. I’m always on the look-out for a new acquisition whether it’s a second-hand gem from one of those lovely stores that have that smell (you know what I’m talking about) and a shop cat or a fresh shiny new one hot off the press. As such, I’m an avid reader of book reviews.
The book review–more than the book’s own synopsis–often provides me, a potential reader, with a viewpoint that can help decide whether it’s to go into the Jenga-like book piles scattered around my home or whether I might prioritize something else. To be clear, a negative review may not condemn the book to the “to-be-ignored” list. A good book review reveals something of the author, allowing the review-reader to assess whether the author is simpatico. Therefore, a negative review by a reviewer with whom I sense philosophical differences may well incline me towards reading a book as much as a positive review from someone with whom I feel an affinity.
There are, I believe, at least 5 generally accepted key qualities of a good book review. These include:
A couple of days ago the BBC’s online magazine on disability, Ouch!, published an article about the phenomenon of unwanted touching by nondisabled people that is endured by many people with disabilities. The prompt for the article was the report of a woman wheelchair user who had embellished her wheelchair with metal spikes on the handles in an attempt to stop them being grabbed by (supposed) ‘helpers’.
A screenshot of the BBC article mentioned by the author
The article explains very well why this physical contact, which often also includes moving the wheelchair bodily, is unwanted. Other people with disabilities added their voices, proving that blind, mobility impaired, or otherwise anomalously embodied people are also treated as literally up for grabs by the nondisabled world.
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When I posted this article on Facebook I’ve received some comments from non-disabled people, to the effect that the disabled people were either exaggerating or oversensitive, since they (the nondisabled commentators) never noticed it as a problem. Now, the only possible responses to that argument are (a) well, you wouldn’t notice it, would you; and (b) in any case, it’s not really your place to judge whether the reports are exaggerated or not. This form of epistemic injustice (it can’t actually be that bad) is experienced only too frequently by people with disabilities.
It’s certainly not confined to people with mobility or visual impairments either. As a deaf person I routinely encounter people who think that, if I don’t seem to have heard them, it’s appropriate then to shove me in one direction or another. From this experience I can say from that being manhandled like this is not just alarming: it’s an act that confirms what disabled people already suspect, that much of the world doesn’t think we are worth the consideration that is given ‘normal’ people.
Editor’s Note: there is a useful set of primers on disability etiquette you might take a look at if you want to see some ways you can ensure that you are respectful of disabled folks, regardless of whether you yourself are disabled. Those of us who are disabled may need a little help on how to interact with folks whose disabilities are different from our own, and those of us who are not presently disabled might need a little help all around. Keep in mind that no single source of advice will have all the answers!
EDITOR’S NOTE: Sometimes contributors to IJFAB Blog find themselves having an informal conversation in person or on social media about a news event. When these conversations might shed light on otherwise-overlooked issues, a blog entry featuring some of the ideas can share them with IJFAB Blog readers.This is one such blog entry.
On Friday October 4, a week ago, a flurry of news articles heralded a new technologically-sophisticated mobility device. The device? A “brain-controlled exoskeleton” that could “provide[e] hope to tetraplegics[/quadriplegics] seeking to regain movement.” The successful use of the device was achieved after months of training the user to harness their brain signals in order to control a computer-simulated avatar. The user, a 28 year old French man named Thibault from Lyon, said “When you are in my position, when you can’t do anything with your body… I wanted to do something with my brain… I can’t go home tomorrow in my exoskeleton but I’ve got to a point where I can walk. I walk when I want and I stop when I want.”
While many bioethics accounts on Twitter and social media gushed with the possibilities, or simply relayed the news story without comment, some feminist bioethicists were more skeptical. Regular IJFAB Blog contributors Jackie Leach Scully, Joe Stramondo, and Alison Reiheld had a brief conversation about their concerns.
The Trump administration has been open about their family planning priorities, as evidenced in this 2018 blog post. The administration is pushing abstinence and “natural family planning” methods over safe, more effective contraceptives, emphasizing privately held religious values in public health programs.
The term “faith-based” has seen the most increase, with the word now used 34 new times. While not showing as dramatic of an increase, the terms “marriage” “abstinence” and “natural family planning” have increased as well.
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Equally concerning are the terms that are being used less: the words “gender” appears 68 fewer times “contraception” 20 fewer times, and “pregnancy” 19 fewer times. “Science-based” and”evidence-based” also saw decreases.
This is very concerning from a bioethics perspective, as the government is supposed to remain neutral on religious matters, and instead is inserting language reflecting privately held religious values into official government documents.
Folks whose toolkit does not yet include American Black Feminism and Womanism may want to take a look at the New York Public Library’s, Black Feminism Introductory Research Guide, the scope of which is described here by Amara Green of the Schomburg Center for Research in Black Culture (Jean Blackwell Huston Research and Reference Division).
It includes work by Audre Lorde, Alice Walker, Zora Neale Hurston, Angela Davis, the Combahee River Collective and more via various forms of media: literature, manuscripts and archives, film, audio, and more.
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Feminist bioethics can benefit enormously from these resources. In fact, without them, we’re liable to go badly wrong. If you want to add some to your hopper, or refresh your memory, this is a useful tool.
In positive bioethics news, a UN report has found that more women and children survive today than at any other point in history. Since 2000, child deaths have been reduced by nearly half and maternal deaths by over one-third. This is primarily due to wider access to affordable and quality health care and the implementation of universal health care coverage.
Although this is positive news, there is still much work to be done. Millions of children and hundreds of thousands of women are still dying each year. And, rates of death are substantially higher in low income countries, meaning much work is needed to meet the demands of the principle of justice.
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Still, the new estimates reveal that 6.2 million children under 15 years died in 2018, and over 290,000 women died due to complications during pregnancy and childbirth in 2017. Of the total child deaths, 5.3 million occurred in the first 5 years, with almost half of these in the first month of life.
…
The estimates also show vast inequalities worldwide, with women and children in sub-Saharan Africa facing a substantially higher risk of death than in all other regions. Levels of maternal deaths are nearly 50 times higher for women in sub-Saharan Africa and their babies are 10 times more likely to die in their first month of life, compared to high-income countries.
The International Network on Feminist Approaches to Bioethics (FAB) is pleased to invite proposals for panels and papers for presentation at the 2020 World Congress (FAB 2020).
A street in Philadelphia is lined with flags from nations around the world. Trees and grass are on both sides of the street. Skyscrapers rise against a blue sky.
IAB Congress and FAB Congress rotate across the globe every two years, moving between Europe, Asia, and the Americas. The FAB World Congress will be held from 17-19 June 2020 at the University of Pennsylvania, in Philadelphia, PA, USA.
FAB is affiliated with the International Association of Bioethics (IAB). The final event of FAB 2020 will be a plenary session run jointly with IAB 2020.
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The 2020 IAB World Congress theme is: Solidarity and Autonomy – Bridging the Tensions.
The FAB 2020 FAB World Congress theme is: Feminist Perspectives on Solidarity and Autonomy
Submissions are particularly welcome on this theme and associated topics. We will also welcome submissions on approaches to feminist bioethics and submissions that examine other bioethical issues from feminist perspectives.
The conference organizers are keen to continue the strong FAB tradition of embracing contributions from a wide range of disciplines, including philosophy, social sciences, critical cultural studies (e.g. gender and sexuality studies, disability studies, race studies, etc.), law, public health, and others. We also particularly encourage submissions from early career researchers.
