For several years, IJFAB Blog has been helmed by Alison Reiheld. She will now be joined by Kimberly Engels.
Professor Reiheld will continue to oversee original contributions and introduce the occasional news story under the Editors tag, in addition to contributing articles under her own content. Professor Engels will be overseeing news articles with special attention to broadening our attention to global issues in bioethics.
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Please welcome our new and improved IJFAB Blog editorial team.
In the last few days, allegations of terrible ethical violations have hit the news. These primarily concern Congolese women who are being recruited for the Ebola vaccine trials, and who are seeking vaccination under the “compassionate use” exemptions that allow ring vaccination with this not-yet-cleared-for-use vaccine where Ebola epidemics are occurring. For more on where and under what circumstances the vaccine is being made available, see the World Health Organization site, last updated October 2018.
In January, Foreign Policy claimed that Ebola has gotten so bad that “it’s normal,” and warned that cases were popping up in North Kivu that had no clear chain of transmission, making it very hard indeed to stop the spread of the disease. Two days ago, the death toll from the current Ebola outbreak in the DCR was reported to have surpassed 500 dead.
For more on this issue of women being coerced into sex in exchange for Ebola vaccination, see these sources:
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Of note: aid organizations familiar with corruption and the context of the delivery of medical aid in this region are not even surprised. Also of note: the DRC’s Ministry of Health has hit back, claiming the reporting by Holt and Ratcliffe in the Guardian is “shoddy.” Their argument is that the report showed that women and girls were afraid they would be extorted for sex, and were extorted for sex in relation to other health matters, but none explicitly related to Ebola vaccine access. An RT article on this issue noted that the Congolese government did put out “a public call for residents to report anyone offering treatment or vaccination in exchange for money,” but it is not clear whether there was a request for reports of anyone offering treatment of vaccination in exchange for sex.
Research ethics often focuses on coercion which participants are subjected to in order to get them to consent. Here we have a pattern in which people desperately want to participate and are allegedly coerced into providing sex in exchange for access.
We will be watching this issue and bring you updates as the matter shakes out.
This guest blog comes to IJFAB from Lauren Freeman and Heather Stewart, and conveys the core of the argument they render in a recent issue of the Kennedy Institute of Ethics Journal. Freeman is Associate Professor of Philosophy at the University of Louisville and a core member of the MA in Bioethics and Medical Humanities. Stewart is a PhD student at the University of Western Ontario, whose work in medical ethics focuses on delivery of care to members of queer and trans communities. Freeman and Stewart are co-authoring a book called Microaggressions in Medicine.
‘Microaggression’ is a term that gets
thrown around a lot these days, especially on college campuses. The term refers
to routine and seemingly insignificant comments or gestures, sometimes
intentional, but mostly unintentional, that convey negative messages to targets,
who are members of one or more marginalized group.
IMAGE CREDIT: Screenshot from Fusion Comedy, “How Microaggressions Are Like Mosquito Bites.” https://www.youtube.com/watch?v=hDd3bzA7450
Many people, especially those on the
receiving end, know that microaggressions are real. In fact, their everyday
experiences are often shaped, colored, and constrained by the negative content
of microaggressions, even though microaggressive acts are often committed by
well-intentioned individuals, sometimes even by their friends, family members,
or colleagues.
But there’s also a large number of
people who doubt the very existence or seriousness of microaggressions. These
critics claim that what we have on our hands is an overly sensitive generation
of snowflakes who just need to calm down, grow a spine, and stop taking
everything so personally.
Our recently published article in TheKennedy Institute of Ethics Journal (KIEJ), “Microaggressions in Clinical
Medicine,” proposes a new way of understanding microaggressions, one that
aims to respond to critics who doubt the reality of the phenomenon. Our goal is
to convince critics both that microaggressions are real and also that they
can cause serious and enduring harm to those on the receiving end. The context of
our discussion is medicine, but we think that microaggressions occur most everywhere.
As you may know, the US has recently been in the throes of an impassioned debate over abortion. There has recently been a great deal of discussion of New York’s new abortion law, and on Virginia politicians’ claims about late abortion. Some conservative news sources have claimed that these new laws would make it legal to perform an abortion on a laboring woman (one who is giving birth), or have falsely claimed that the NY law would require nurses to label unwanted newborns with a red ribbon around the toe indicating that the baby should be allowed to die. In Trumps’s February 5 State of the Union address, he falsely claimed that the Governor of Virginia states he would execute a baby after birth.
In response to the general tenor of the debate throughout late January, the American College of Obstetricians and Gynecologists (ACOG) has issued an opinion on the importance of having all the facts before arguing these topics. While some media sources have billed this as a response to the February 5 State of the Union address by President Trump, the letter was in fact posted on the ACOG website on February 1.
IJFAB Blog’s Editor thinks these might be useful to our readers. Since the opinion was issued as a PDF, the Editor is presenting the text here as an image as well as in copy-paste for greater accessibility to folks who might be converting text to audio. The following text is identical to the text in the image of the letter, below.
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February 2019
Facts Are Important Abortion: Care Later in Pregnancy is Important to Women’s Health
Facts are very important, especially when it comes to women’s health.
As with all of women’s health, policy related to abortion care, including abortion later in pregnancy, must be based on medical science and facts. Politicians should never interfere in the patient-physician relationship. These are the facts about abortion later in pregnancy.
Abortion after 21 weeks accounts for slightly more than 1 percent of all abortions that occur in the United States.i Abortion later in the second trimester is very rare, and abortion in the third trimester is rarer still, accounting for less than one percent of abortions. The term “late-term abortion” has no medical definition and is not used in a clinical setting or to describe the delivery of abortion care later in pregnancy.
The need for an abortion later in pregnancy could arise for a number of reasons, including fetal anomalies or complications that threaten a woman’s health. Women, in consultation with their physicians, must be able to evaluate all appropriate treatments and make informed choices about what’s best for their health and their pregnancies. Depending on the circumstance, this might include abortion care, induction of labor, or cesarean delivery. Women’s access to accurate, full information and care must never be constrained by politicians.
Many abortions that occur later in pregnancy involve fetal anomalies incompatible with life, such as anencephaly, the absence of the brain and cranium above the base of the skull, or limb-body wall complex, when the organs develop outside of the body cavity. ii In these cases, where death is likely before or shortly after birth, patients may decide whether to continue the pregnancy and deliver a nonviable fetus or have an abortion. In any case, the focus of medically-appropriate, compassionate care must be on the patient and what she feels is best for her health and her family.
Abortion later in pregnancy may also be necessary when complications severely compromise a woman’s health or life, conditions which may also reduce the possibility of fetal survival. These might include premature rupture of membranes and infection, preeclampsia, placental abruption, and placenta accreta. Women in these circumstances may risk extensive blood loss, stroke, and septic shock that could lead to maternal death. Politicians must never require a doctor to wait for a medical condition to worsen and become life-threatening before being able to provide evidence-based care to their patients, including an abortion.
Sound health policy must be based on scientific facts and evidence-based medicine. The best health care is provided free from political interference in the patient-physician relationship.
The American College of Obstetricians and Gynecologists (ACOG) supports robust, factual debate on issues of importance to the American people. We urge you to call on us to provide expert factual information on women’s health issues. For more information, please contact ACOG Government Affairs.
i https://www.guttmacher.org/evidence-you-can-use/later-abortion
ii https://rarediseases.info.nih.gov/diseases/3251/limb-body-wall-complex
I have been seeing so much about the New York abortion law debate that I feel almost compelled to say a few words about it.
The law states that a physician “may perform an abortion when, according to the practitioner’s reasonable and good faith professional judgment based on the facts of the patient’s case: the patient is within twenty-four weeks from the commencement of pregnancy, or there is an absence of fetal viability, or the abortion is necessary to protect the patient’s life or health.”
I understand that some people may believe the patient’s life is not worth as much as a fetus’ life or that God will work it out the way God sees fit and so on.
I understand that bioethicists can’t always agree on what the word “health” means. It frightens people to realize that physicians may define health in ways that they disagree with sometimes.
But I don’t understand the complete lack of empathy or compassion regarding some of these cases. How can people hate so hard and be comfortable with such sweeping generalizations?
I keep thinking about a family that desperately wanted a baby discovered after a 21-week anatomy scan that their daughter had bilateral multicystic dysplastic kidney disease. The mother writes,
Her kidneys were not functioning, she had no amniotic fluid and her lungs would never develop properly. Three doctors told us our daughter’s condition was 100 percent fatal due to the early onset of her disease. She would either be stillborn or would not survive long after birth. My own risk would increase sevenfold if I continued to carry her.” They made the decision to terminate the pregnancy. They had to wait 72 hours, private insurance wouldn’t pay for the abortion and the government regulations contributed to the deep trauma of this family.
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I think this is sad.
I think that thinking it is sad and trying to not have laws where people are more traumatized is not ridiculous and selfish.
You may disagree with my position but the memes and posts against the law don’t mention these cases, or the restrictions on these laws. This seems profoundly intellectually dishonest to me.
I wish we could stay away from language such as pro-choice or pro-life simply because these are values that most people cherish outside of the abortion debate. Are we really anti life or anti choice if we don’t hold a particular view? How many of you really believe that a large percentage of human beings are truly haters of life? How many of you really believe that a large percentage of human beings hate the concept of freedom and choice?
This doesn’t seem right and the words have so much emotive content that it doesn’t seem this type of language is likely to lead to a richer understanding of the topic.
The UN World Health Organization’s Day of Zero Tolerance for Female Genital Mutilation is today, February 6, 2019.
As the WHO says “#FGM violates women’s and girls’ rights. It must stop now.”
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There is space for a more complicated debate on FGM, such as whether it is a good idea to make physicians and nurses mandatory reporters for FGM because this might lead parents who have allowed this to be done to their daughters to prevent them from seeking medical care for this or other issues. Some ethicists have argued that health care providers should perform FGM as it is the lesser of two evils, assuming the patient’s parents will have it done in the traditional way, regardless. WHO disagrees. And their core claim that FGM violates women’s and girls’ rights is exactly on target.
Here is yet another example of the constant violations of our privacy rights we now endure in online settings.
I’m scheduling a medical appointment online right now. There’s no mention of patient confidentiality or HIPAA on the scheduling site–but in order to submit the appointment request, I must check a box stating I agree to the Online Scheduling Terms of Use. Clicking the link to see what I must agree too, I read a long EULA-like form. It includes the following language:
You acknowledge and agree that your Submissions are non-confidential and do not contain proprietary information. InQuicker will not be required to treat your Submissions as confidential, and you acknowledge and agree InQuicker may, in connection with its business, use any of the concepts and ideas contained in your Submissions (including without limitation, product or advertising ideas) without compensation to you, and InQuicker will not incur any liability to you as a result of any similarities between concepts and ideas contained in your Submissions and future InQuicker operations and business.
You acknowledge and agree that by posting Submissions to the site, you grant InQuicker a worldwide, perpetual, royalty-free, irrevocable, transferable, and fully sublicensable right, license and permission to use, reproduce, modify, adapt, translate, distribute, publish, create derivative works from and publicly display and perform the Submissions and any Content contained therein throughout the world in any media now known or hereafter created without attribution for the sole purpose of advertising, promoting, marketing or other exploitation or sale of the InQuicker business or services.
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This is standard sort of language for social media, apps and content-hosting platforms, in which the company is basically saying, “You don’t own your posts or content, we do.” It’s exploitative in the usual setting. It’s nonsensical and violative in this context of trying to book a doctor’s appointment, and having to describe one’s symptoms in order to do so. I am forced to agree that InQuicker can keep my medical description forever and publish it, sell it or use it in advertising whenever it likes. That is totally inappropriate, but I can’t schedule the appointment if I don’t agree.
Yet it seems that nobody has stopped InQuicker, a medical appointment scheduling platform, from including this language. It’s hard to see how to even do that. The patient website employing InQuicker has no link or information about how to note issues or concerns with the platform. And the InQuicker corporate website states that patients should speak directly with their providers. It only provides a contact form for prospective business partners seeking to purchase a license to use the InQuicker platform.
We all encounter these situations all the time. It’s maddening. And it’s difficult for the practice of medicine to adhere to medical ethics when it is intertwined with business and IT systems which do not.
For decades, feminists and feminist bioethicists in particular have been pointing out that male responsibility for birth control is essentially limited to barrier methods, e.g. condoms, and to withdrawal. While condoms have the advantage of also reducing the transmission of STIs (sexually transmitted infections), there is much to be said about implantable contraceptives which do not need to be remembered daily as well as about daily hormonal measures that people with uteruses can control and use on their own time without affecting sexual encounters. Contraceptives for people with uteruses include not only barrier methods like female condoms but also spermicides, IUDs (intrauterine devices, either plastic saturated with hormones that release over time or copper), the morning after pill, hormone-lease patches that can be put on skin, and hormone-saturated rods implanted in the arm such as norplant.
However, these methods impose burdens that contraceptives for people with penises simply do not impose. There is the mental load of remembering to take oral contraceptives regularly, the physical load of being exposed to exogenous hormones including side effects for cancer as well as bodily changes outside the user’s control, sometimes loss of libido, pain of implantation, and literal costs. These burdens are disproportionately born by people with uteruses, most of whom are cisgender women and some of whom are transgender men.
Because of this unequal, gendered distribution of burdens, feminists have long hoped for hormonal contraceptives for sperm-producing cisgender men and trans women which can share the burdens more evenly.
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What remains to be seen is whether men will take advantage of this opportunity, and whether there will be long-term burdens on those who take this pill which are not apparent from the short term safety testing. After all, the negative health effects of oral contraceptives which affect ovulation and implantation were not confirmed until many years after their introduction.
Nonetheless, this is a promising development for people wanting to have sex with reduced risk of pregnancy, who wish to share the burdens more equally with their partners.
Over at the Hastings Center blog Bioethics Forum, Charlene Galarneau (who has written for IJFAB Blog, as well) has a few thoughts on how to broaden our understanding of what “Bathroom Bioethics” should mean.
What do many transgender persons, farmworkers, homeless persons, people with disabilities, and many other persons in the United States have in common? One answer: they/we live and work in spaces lacking safe, accessible, and adequate toilet facilities. Think about that for a minute. Think about how you respond–multiple times each day–to your needs to eliminate your body’s wastes. Think about the distress you feel when finding a bathroom becomes difficult – or impossible.
Virtually all humans have toileting needs and these needs vary, as do our bodies in their social-political contexts. Our particular needs vary by gender, age, pregnancy, menstruation, medical condition, and work, as well as by cis-centric, andro-centric, and ableist societal norms that obscure some persons and their needs as well as the caregivers that some need for toileting. Drawing attention to the global inadequacy of toilets, the United Nations has declared November 19, World Toilet Day. This year’s theme is “When Nature Calls.”
An extraordinary panel on “toilet justice” at the 2017 American Academy of Religion’s annual meeting explored the nature of toilet justice/injustice in refreshingly candid, inclusive, and insightful ways. (Some of what was said there is available here.) I attended this session because three decades ago I, with other public health workers in Colorado, advocated for “field sanitation,” that is, for porta-potties and drinking water in the state’s agricultural fields. Most farmworkers then and many still now work long and hot days in fields without effective access to a toilet, to hand washing, and to safe drinking water. Working with community and migrant health centers, the state Department of Health, and farm labor groups, we testified to the state legislature on a proposed field sanitation bill. I spoke specifically about the bodily needs of female farmworkers and their children, children who were also working or otherwise present in the fields.
Alas, I am getting ready to go to FAB Congress in Bangalore, India soon, so I don’t have the time to craft a full argument on two news stories about reproductive ethics that came to my attention this past week. But I did want to take this chance to get them out there for y’all to consider in case you missed them.
On November 13, 2018, the Canadian Broadcasting Corporation reported on how indigenous women in some hospitals were kept from seeing their newborns until they agreed to sterilization. This is clearly coercive, and seems to directly target ethnicity as a reason for sterilization. It ties into a history of decisions in North America made for and about indigenous peoples that have had devastating effects on reproductive choice and have reinforced settler-colonial attempts to confiscate land and resources from people whose numbers dwindle in part because of coercive reproductive practices. The CBC article reports that:
At least 60 Indigenous women are pursuing a class-action lawsuit launched last year, alleging they underwent forced sterilizations over the past 20 to 25 years in Saskatchewan. Each woman is claiming about $7 million in damages.
In most of the cases — some happening as recently as 2017 — the “women report being told that the procedure was reversible,” [Alyssa] Lombard [a lawyer at an indigenous-owned law firm representing the women] said. She said the procedures, known as tubal ligation, have had a huge effect on the women.
Alisa Lombard is representing at least 60 women in the lawsuit. Each woman is claiming about $7 million in damages.
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In January of 2017, the Saskatoon Health Region separately apologized for, and admitted that, such coerced sterilizations have happened. However, this current class action lawsuit is directed against the physicians who performed the procedures, including some who were sterilized even after SHR’s apology. In 2015, the Saskatoon Star Phoenix led reporting on this issue, opening with the case of Brenda Pelletier, awoman who, while allowed to spend time with her baby, was pressured to consent to sterilization before the hospital would allow her discharge. Like other women subject to the pressure of not being allowed to see their children, those charged with getting her consent said or implied that the procedure was reversible. The Saskatoon Star Phoenix gave a difficult-but-essential-to-read explanation of the history of settler-colonial regulation of indigenous women’s reproduction and interviewed author Karen Stote who insists that these instances cannot be understood without being placed in to the larger historical context. For more on the global context of this issue, see the 2014 UN paper from the Inter-Agency Support Group on Indigenous Peoples’ Issues called “Sexual and Reproductive Health and Rights of Indigenous Peoples” and the UN interagency statement “Eliminating forced, coercive, and otherwise involuntary sterilization.”
A woman cries while listening to Testimony on Sterilization of Indian Women: The United Nations International NGO Conference on Indigenous Populations and the Land, Geneva, Switzerland, 1981. PHOTO CREDIT: Dick Bancroft, Minnesota chronicler of the American Indian Movement (AIM)
Meanwhile, across the pond in the U.K., pregnant women in prisons have been denied adequate labor & delivery care. While the headline reads “Female prisoners in England left to give birth without midwife”, that might imply that the issue is that female prisoners did not have access to midwives in addition to obstetricians. The truth is far more heinous.
Initiated in 1970, Title X is the only federal grant that is solely dedicated to providing family-planning funding, with a focus on serving low-income populations. The Title X program historically allowed all women, regardless of economic circumstances, access to birth control methods of their choice. The program was intended to be judgment free and to provide all options to low-income women, who may not otherwise have access to them.
This 2017 infographic from the Guttmacher Institute gives a brief overview of Title X services in 2015.
In June of 2018, the Trump administration introduced new standards for the program. The changes, lauded by conservatives such as U.S. Representative Ron Boyd in a November 11 editorial, will now emphasize natural family planning methods over methods such as the pill, IUD, and implant. These medical contraceptive methods are far more effective under real life circumstances than natural family planning, as Kathleen Sibelius argued in an October 2018 editorial. Natural family planning is only as effective as other methods when practiced perfectly, and the work involved is considerable: the most accurate methods include taking daily body temperature and monitoring cervical secretions. This leads many women to seek methods that offer maximum effectiveness with more convenience. A survey of low-income women in Texas likely to utilize the Title X program showed that less than 1% intended to use natural family planning. The change in standards no longer requires all Title X providers to offer all types of birth control. All providers are required, however, to offer counseling on natural family planning. The shift in emphasis for the Title X program reflects a move to actively promote natural family planning as it is often regarded by religious groups as a “natural” form of birth control in line with church teachings. Additionally, the proposed changes reflect an underlying agenda to exempt employers from having to cover birth control methods some find morally objectionable, such as IUDs, which some still falsely believe are “abortive” methods.
IJFAB Blog is beginning a new occasional series, “Decolonizing IJFAB Blog.” Medical Ethics has long been dominated by North American / European toolkits and contexts. This is certainly true of this Blog even though we are associated with the International Journal of Feminist Approaches to Bioethics. While the journal’s logo includes a map of the world, the IJFAB Blog topics tend to deal with the North American context and occasionally the European context. The Blog Editors have generally been American, and their interests in global bioethics have not consistently translated into better inclusion of other medical ethics contexts and issues on this Blog.
In this recurring series, we will post links to some articles that will help the reader to expand toolkits and contexts. The goal is not to give a complete or representative view, but to give more of a view than is normally given, to pay attention, and to begin to develop new tools and background information. Feel free to suggest more resources on the comments (blogs, articles, books, folks to follow on Twitter).
Here are some resources that drive us to think about medical ethics with respect to some of the many nations and context on the African Continent. Providing these resources is meant to give us a start and does not mean that the Editor necessarily agrees with the authors’ specific positions. It certainly does not mean that these are the only or even the best resources. But they are a start. We begin with a few websites, and move into discrete articles and a book.
Encyclopedia of Bioethics, Medical Ethics, History of Africa: Sub-Saharan Countries: acknowledges that issues are “not homogeneous in any sense” over this nine million square miles of many countries and peoples. Includes discussion of melding traditional medicine with western medicine, the ethics of training and paying doctors, population and family planning and abortion especially with respect to foreign aid, healthcare and research in the era of AIDS, and biomedical research ethics.
The archive of the South African Journal of Bioethics & Law reveals a whole host of important topics and cases. The current issue focuses on the Life Esidimeni case, in which institutionalized mental health patients were badly mistreated–starved and neglected–resulting in 143 deaths. It spurred deinstitutionalization efforts, which have been characterized as “a shambles.”
The South African Medical Association‘s section on Law & Ethics includes a list of Casebook studies and Articles on topics ranging from physician responsibility to discuss costs, to room sharing, to going on strike as a labor action, to treatment of immediate family members, to whether physicians are allowed to refuse to fill out the J88 form which is the medical evidence form required in order for a patient to proceed with a criminal complaint in cases of rape or assault or attempted murder. This latter pertains to whether victims are denied access to justice by physicians, since without this form a victim cannot lay charges. Another uniquely South African issue considered as a case is the 2014 case of the selling of anti-apartheid activist Steve Biko’s post-mortem report.
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In this chapter in Rosemarie Tong’s edited volume on global feminist bioethics, de Gruchy and Baldwin-Ragaven argue that health professions maintain particular global power relations, as evidenced by the way that South African health professionals and institutions supported the apartheid state in its violation of the basic human rights of black people.
