New assisted reproduction regulations require feminist voices

Editor’s Note: Today we have a special co-authored blog entry by four feminist reproductive justice advocates working on what is known in bioethics as ARTs (Assisted Reproductive Technologies) and other related tech. 

Francine Coeytaux, MPH    Co-Director, Pro-Choice Alliance for Responsible Research

  Marcy Darnovsky, PhD    Executive Director, Center for Genetics and Society

    Susan Berke Fogel, JD    Co-Director, Pro-Choice Alliance for Responsible Research

       Emily Galpern, MPH    Consultant, Center for Genetics and Society

For more than a decade, Canadian regulation has explicitly countered commercialization of reproduction, prohibiting payment for surrogacy, sperm, or eggs as part of the Assisted Human Reproduction (AHR) Act of 2004. These policies are grounded in the view that preventing a market trading in reproduction as “goods and services” is fundamental to safeguarding the health, safety, and rights of gamete donors and surrogates.

This screen cap from the Center for Genetics and Society shows the beginning of a brief Introduction to the law. Click on the image for higher resolution.

Currently, Health Canada is in the process of developing additional regulations that were required but never created under the AHR Act. The department has published a consultation document to solicit input to the process. A number of Canadian women’s health scholars and advocates have submitted responses based on decades of involvement with assisted reproduction policy, women’s health research, and bioethics deliberations.

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IJFAB’s Pronoun Policy: Singular ‘they’ or gender-neutral forms such as ‘ze’ or ‘zir’… just be consistent within your paper
Jackie Leach Scully

Editor’s Note: In the past year, IJFAB Blog has featured several blog entries on shifting pronoun usage not only in the English language but in the International Journal of Feminist Approaches to Bioethics itself.  IJFAB Editor Jackie Leach Scully brings us this reflection on IJFAB’s revised pronoun policy. Several authors have battled with IJFAB copy editors over pronoun usage in their articles. This policy should put an end to such conflict and provide a shared reference for authors, editors, and copy editors.

From Volume 12, issue 1 onwards the style guide of IJFAB includes the following section:

Since “he” or “she” is no longer adequate to describe the genders of all individuals, IJFAB supports the use of the singular “they” as long as the usage is consistent throughout the article or review. Other options including recasting the sentence to obviate the need for pronouns, dropping pronouns or replacing them with nouns, using plural nouns and plural pronouns, or using gender-neutral forms such as “ze” or “zir.”

This addition to the style guide was agreed upon by the Editorial Team in June 2016, in response to current shifts in language use that, in turn, reflect changes in the way some people wish to identify themselves and live out their lives.

All language use changes over time, as a result of complex social and political developments. Sometimes, these shifts just seem to happen for reasons of fashion or economy of effort (here in England, at some point back in the mid-twentieth century we got tired of saying “motor car” and started using the more succinct “car” instead). Other developments, however, come about through conscious decisions and involve a lot of deliberate, strategic work. For example, those of us concerned about gender equality, and who believe that language profoundly affects cognitive frameworks – that it’s not just about words conveying information – have struggled to gain acceptance for the use of “Ms” alongside “Miss” and “Mrs.” We’ve also highlighted the problematic claim that the pronoun “he” can be understood to include both genders without also importing assumptions about the types of human we consider normative.

Many people today are challenging conventional gender binaries, and some are actively trying to live outside them.

This screenshot from the University of Wisconsin – Milwaukee LGBT Resource Center shows some of the reasons people want to move beyond the use of “he” and “she” as singular pronouns in the English language

The Editorial Team of IJFAB (and much of the readership, as we know from feedback) wants to acknowledge and explicitly endorse the moral position staked out by doing so. In practice, this has been IJFAB’s position for some time, but we decided last year to include an explicit statement in our style guide – because we wanted to make it clear that we support the social and ethical work being done by those involved in this endeavor. We’re making this announcement here because recent exchanges on social media show some people still assume that IJFAB’s policy is to refuse submissions with a more inclusive pronoun usage. This isn’t the case.

From the point of view of this journal, the important thing is that authors reflect on pronoun use and make their own choices. You’re free to use whatever form(s) you want, as long as it doesn’t obscure or confuse your meaning, and as long as it’s not discriminatory or offensive. Whatever and however you write, IJFAB welcomes your submissions!

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Who Should Be Responsible for Environment, Health, and Politics: Detroit and 1,300 other “hotspots” have higher lead poisoning rates than Flint and someone needs to do something
Alison Reiheld

The long-time reader of IJFAB Blog, and alert bioethicist who follows the news, will remember the Flint water crisis.  As numerous investigative news articles–and even at least one news comedy show–have pointed out, Flint is by no means alone in the US in having water that is not actually safe to drink. But water isn’t the only source of lead poisoning.  According to a Reuters review of news and research, nearly 4,000 communities in the U.S. have lead poisoning rates in children that exceed acceptable levels. 1,300 have blood levels that are at least four times the rate in Flint at the height of the crisis. Baltimore, Maryland and Cleveland, Ohio and Buffalo, New York and Philadelphia, Pennsylvania are among them.

Lead Levels in the US. The darker the shade, the higher the percentage of children affected by lead poisoning.

So is the city of Detroit which, like Flint, is one of Michigan’s major population  centers. According to The Detroit News, a study done by the Detroit Health Department in 2016 found a correlation between lead poisoning and housing demolitions in the city; 93% of homes were built before 1978 and the risk was highest for kids who lived within 200 feet of demolitions that occurred between May and September when kids are liable to be playing outside. It is this old housing stock that public health experts primarily blame for lead poisoning in Detroit. Old housing stock not only has lead-based paint still in the walls, but also often lead service lines connecting them to the city’s main lines. Replacing these, much like demolishing houses in a way that would contain dust and debris, is costly.

We often see the headlines about specific cities. But just as we can miss  the forest by focusing on the trees, focusing on individual cities can cause us to miss the big patterns. America’s public health problems are based in a number of factors. Pediatric lead exposure in particular has many possible causes, from communal resources and whether they are sufficient to replace aging infrastructure to whether politicians care about all stakeholders equally when distributing resources to where people live and whether they can afford to move.  It thus bridges concerns about health disparities and health care justice, political justice, and environmental justice.

Individual communities might be able to resolve some of these problems, but this is a systemic problem that a far-reaching agent of justice may be needed to resolve. Indeed, it may be that only a far-reaching agent of justice can intervene successfully to require local communities to do what is right and to give them the resources needed to do so. And as Onora O’Neill has argued, the capability of an agent of justice to remedy injustice gives rise to obligations to do so. How much moreso when there are very few agents that have such a capability?

It’s time for the federal government to do more about infrastructure, more about environmental contaminants which impact some people more than others based on where they live, more about the public health issue of childhood exposure to lead. The feds have acted before: legal requirements for unleaded gasoline made enormous nationwide improvements in pediatric exposure to lead.

What can be done now? What should be done? The answer cannot be “nothing” or “the same thing that’s been happening.” Neither of those will, or has, worked. By whom? That one, at least, is clear: those who can, whether they be local, state, or federal agencies.

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Disparities in Maternal Mortality: Some American women have a higher risk of the highest cost of being pregnant

Maternal mortality is a basic public health measure. It is also one of the many health outcomes on which the United States ranks much lower than other comparably developed nations. As per Ann Simmons’ superb article on the subject of maternal mortality in the US and specifically in the state of Texas:

A woman in the U.S., where the maternal death rate more than doubled between 1987 and 2013, is more likely to die from pregnancy-related causes than in any country but Mexico among the 31 industrialized countries of the Organization for Economic Cooperation and Development that reported data.

As Simmons goes on to note, the state of Texas, of all of the US’s 50 states, has one of the worst maternal mortality rates. But most distressingly, Texas’s statistics–like the entire nation’s–show health disparities on this measure. Some Americans have substantially worse maternal mortality rates than other Americans. Those Americans are African-American women.

The maternal death rate in Texas after 2010 reached “levels not seen in other U.S. states,” according to a report compiled for the American College of Obstetricians and Gynecologists, based on figures from the U.S. Centers for Disease Control and Prevention.

Black women in Texas are dying at the highest rates of all. A 2016 joint report by the Texas Department of State Health Services’ Maternal Mortality and Morbidity Task Force found that black mothers accounted for 11.4% of Texas births in 2011 and 2012, but 28.8% of pregnancy-related deaths.

Simmons goes on to adeptly break down the results of several investigations into health disparities in maternal mortality. I strongly recommend the article to anyone following global public health, maternal mortality, pregnancy and childbirth, and health disparities.


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New film coming out based on the disability rights book Far From The Tree

You may or may not be familiar with the Andrew Solomon’s Far From the Tree, a book format study of difference within families including families raising children with “extraordinary needs.”  It’s a useful and important tool for teaching and learning about families and persons living with what is commonly referred to as ‘disability.’  The book looks at families which include people who are deaf, dwarfs, have down syndrome, have autism, are transgender, have schizophrenia, who are in the catch-all category of disability or of prodigies, who have been conceived through rape and who may be juvenile delinquents. Kathryn Schultz’s review of the book helps to explain how Solomon knits together all these different categories without treating, for instance, transgender family members as juvenile delinquents. People love each other across difference all the time. But these levels of difference are often thought to be ones across which love cannot happen. Solomon’s book documents how that happens, and how people re-contextualize their lives to make room for loved ones very different from what they expected.

Now, a new documentary is making the rounds, based on the film. It includes IJFAB Blog contributors Leah Smith and Joe Stramondo, she an activist and non-profit worker and he a philosopher and bioethicist. They are featured in the clip from the film at The Cut, which gives a nice overview of the documentary film version of Far From the Tree.  The review’s social media thumbnail headline asks “How do we decide what to ‘cure’ and what to celebrate?”

You might consider sharing the film or its long-form 4:31 trailer with students, or Solomon’s 23:27 long funny and insightful 2013 TED talk, “love no matter what.” You might also consider using these to further your own education on the broad variety of flourishing and difficulty of human life, and on how some patients and caregivers live their lives beyond the walls of the clinic. I know I will.

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What you don’t know CAN hurt you: Epistemic Injustice and Conceptually Impoverished Health Promotion
Alison Reiheld

I want to consider a particular kind of wrong within medicine and health promotion: epistemic injustice and its harms. My case study is obesity conceived of as a public health concern. However, the analytic framework I deploy may prove useful in ethically assessing many health promotion campaigns.

This image combines two images, side by side. One is a fat young girl looking unhappy, with her arms crossed. The text reads "WARNING: it's hard to be a littler girl if you're not. Stop childhood obesity." The other image shows a fat boy with an unhappy expression and his hands in his pockets, slouching. The text reads "WARNING: fat prevention begins at home. And the buffet line. Stop childhood obesity."

Note the message on the left that being a normal girl is incompatible with being a fat girl, or a happy one. On the right, there is a pretty explicit indication of individual personal responsibility (“Fat prevention begins at home. And the buffet line.”).

Individuals—both doctors and patients—are often provided with an impoverished set of conceptual tools for making sense of health and health behaviors, a set of tools that can lead to inappropriate individualization of responsibility and to unproductive attitudes towards health and which behaviors are health promoting.  This is the case with obesity.  Public health campaigns and clinical care of obese persons rely on a family of simplistic reductions.

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Gene editing technology: Where should we draw the line?

Prof. Baylis

Editor’s Note: This guest post comes to us from bioethicist Françoise Baylis. Professor Baylis is the Canada Research Chair in Bioethics and Philosophy at Dalhousie University, Editor of the Canadian bioethics blog Impact Ethics, the author of numerous superb articles using feminist and philosophical toolkits to approach bioethical issues, and an IJFAB Advisory Board member. You can follow Professor Baylis on twitter at @FrancoiseBaylis. 

20th anniversary celebration of the Oviedo Convention begins today, October 24, in Strasbourg, France. The goal of this international conference is to revisit the treaty for the protection of human rights and the dignity of the human being, and develop an action plan for the Committee on Bioethics. In anticipation of this conference, many have been clamoring for changes to Article 13 of the Convention, which prohibits deliberately changing the genes that are passed on to children and future generations (human germline modification). Article 13 currently permits changes to human somatic cells (such as skin cells and muscle cells), but not to human germ cells (egg or sperm) or embryos.

Most people think that it is a good idea to use gene editing technology to make changes to human somatic cells to treat disease. Many people, however, have serious reservations about the potential eugenic use of this same technology to enhance people (for example, to make someone stronger or quicker than the average person), or to make changes that are not limited to individual patients who are being treated, but that will also be passed down to their children. Article 13 entrenches these widely held beliefs.

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Fall 2017 issue of IJFAB is out, with special section Remembering Anne Donchin

If you have already received your paper copy of the new Fall 2017 issue of International Journal of Feminist Approaches to Bioethics (Vol 10 Iss 2), you will have noticed a new look. You may also have noticed that the journal’s international emphasis is reinforced by the graphic, which does not center the Americas but rather Africa, Asia, and Australia.

This issue also represents the beginning of the tenure of a new editorial team of Hilde Lindemann, Jamie Lindemann Nelson, Jackie Leach Scully, Robyn Bluhm, Katy Fulfer, and Kathryn Caras.  Caras has been IJFAB’s senior managing editor since 2014 when she retired from Indiana University Press, where she had been involved with IJFAB for its first eight years. Caras is an indispensable part of the history and success of the journal.

The Contents of the issue are sufficiently interesting that I post them here in full. Note how well they represent the breadth of issues which can benefit from feminist analysis in bioethics.

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Walking the Talk of Inclusivity: Prohibitive Costs of Bioethics & Humanities Conferences


Prof. Saba Fatima


Editor’s Note: This guest post comes to us from philosopher Saba Fatima, Associate Professor of Philosophy and Director of Religious Studies at Southern Illinois University-Edwardsville. 


Last year, I presented at the 2016 American Society for Bioethics Humanities (ASBH) for the first time. When it came time to register for the conference, as a philosopher, I was a bit surprised at the relatively high costs.

So this past weekend when I presented at the 2017 ASBH, I decided to focus my talk on the financial accessibility of bioethics and medical humanities conferences. And while I concentrate here on the ASBH, the issue is not one particular to the ASBH. Other bioethics conferences are often equally as expensive.

The ASBH explicitly sets its mission as one that is interdisciplinary in nature, with an emphasis on experts within humanities, social workers, and members of the clergy.

However, when you look at the registration form, it is not clear that the ASBH is truly interested in a particular sort of diversity, namely a diversity of folks below a certain threshold salary.

This image of the registration form for ASBH 2017 shows that ASBH members pay $400 for registration, Nonmembers pay $700, and Students pay $95. While ASBH membership has a sliding scale for income brackets so that dues cost less for lower income folks, the conference registration fees are not on a sliding scale except that students pay dramatically less than others. Note that any patients or advocates would pay the same fee as people in the medical humanities who pay the same fee as all medical professionals.

This image shows the registration form for ASBH 2017. Note that any patients or advocates would pay the same fee as people in the medical humanities who pay the same fee as all medical professionals.


Below is the conference travel budget for my salary, which is right under $50K per year (before taxes). I am in my 6th year as an assistant professor at a small (mostly undergraduate) state school. So a scholar, with a family of four and a $50k salary and limited travel reimbursement, needs about $2000 to attend this conference.

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Nurse bioethicists: doing bioethics as nurses, doing bioethics of nursing

Over in the well-regarded journal Perspectives in Biology and Medicinewe find the new Winter 2017 issue (Vol 60 Iss 1), a special issue on “Disciplines of Bioethics: Personal Perspectives.” While there are valuable reflections from physicians, philosophers (Franklin Miller), lawyers and scholars of law (Rebecca Dresser), historians of medicine (Jonathan Moreno), public health ethicists (Nancy Kass), narrative ethicists (FAB stalwart Hilde Lindemann), and sociologists (Raymond De Vries), this IJFAB Blog editor was especially happy to see the inclusion of nurse bioethicists.

The cover of the Winter 2017 issue of Perspectives in Biology and Medicine, a Special Issue on Disciplines of Bioethics: Personal Perspectives. The photograph on the cover shows the Hastings Center staff in 1981. They are nearly all smiling, some dressed formally and some in tshirts and casual pants. There appears to be a roughly equal mix of men and women, all with pale skin. The photgraph is in black and white.

Connie M. Ulrich–PhD, RN, FAAN, Lillian S Burnner Chair in Medical and Surgical Nursing at University of Pennsylvania School of Nursing–addresses her career trajectory and the issues she has dealt with as a nurse doing bioethics, and doing bioethics of nursing. Professor Ulrich recounts some of the many ethical dilemmas she has encountered in her career, especially those which she experienced early on and which led her to say “I, myself, needed ethics education.” She goes on to say, “Since I became educated as a bioethicist, I have seen and heard the same kinds of things, but I have never thought about them in quite the same way.”

Ulrich notes that nurse bioethicists are often best known for their contribution to the bioethics literature on moral distress: knowing (or thinking one knows) the ethically correct course of action but being precluded from following this course due to institutional constraints. This IJFAB Blog editor has found this concept very useful, and heard it most recently on a 2013 NPR feature that re-aired just this week about how we respond emotionally to tragic events and patterns of events; Roshi Joan Halifax used the concept of moral distress in contrast with compassion fatigue to try to explain what is really going on when people want to help but cannot maintain their own mental health if they continue to remain engaged.

Ulrich extends the use of moral distress beyond the US context, giving a useful overview of some aspects of the relevance of this context to both resource-rich contexts of care and resource-poor contexts of care, as during the Ebola outbreak in Ghana, Liberia, and Sierra Leone.

Ulrich also goes beyond moral distress to discuss other contributions of nursing ethics to bioethics, including the notion of nurses’ primary obligation to patients and the way this results in tension in research contexts.

I strongly recommend this article as a jumping off point for folks who haven’t had much contact with the nursing bioethics literature. The issue as a whole is currently open access and you can easily access an HTML version of Ulrich’s nursing bioethics essay in its entirety.

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South Korea may loosen legal restrictions to encourage more research into human gene therapy

In international bioethics news, South Korea might alter its bioethics law if lawmakers of the ruling Democratic Party of Korea have their way. This law previously restricted human subject research on genetic alterations to those related to genetic diseases, cancer, AIDS, and disease without a viable non-genetic treatment option. The expansion would allow the scope of gene therapy research to include all diseases.

Under the expansion, if it’s not expressly prohibited, it’s legal. Previously, if it’s not expressly permitted, it’s presumed to be illegal.

This IJFAB Blog editor notes an interesting conceptual parallel here to alternatives  for organ donation: opt in which assumes people don’t want it unless they expressly state that they do vs. opt out which assumes that people do want it unless they expressly state that they do not.

Which sort of system is the best, ethically, for high stakes ethical issues? Are there disanalogies here between organ donation and expanded gene therapy research? Food for thought.


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Health consequences of Flint water crisis grow

Recent reports indicate that the water crisis in Flint, MI, had unpredicted health consequences including increasing the rate of fetal deaths and miscarriages. The effect size is described by the authors of a new working paper as “horrifyingly large.”  You can find out more at The Washington Post  and The Denver Post. The Michigan NPR station, Interlochen Public Radio, has a more cautious interpretation of early reports that attribute increases over background incidence to the water quality in Flint. But nobody thinks the news is good.

You can read the original of the Grossman and Slusky study, here, if you would like to assess methodology, sample size, effect amplitude, etc.

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