Venezuela in the midst of major health emergency
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A new study from the Johns Hopkins Bloomberg School of Public Health and Human Rights Watch suggests Venezuela is in the midst of a major health emergency. While the crisis began two years after the economic crisis in 2010, it took a sharp turn for the worst in 2017, and the situation is now worse than researchers imagined:


Things are so bad that, according to the report and other sources, patients who go to the hospital need to bring not only their own food but also medical supplies like syringes and scalpels as well as their own soap and water.

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Dr. Paul Spiegel, director of the Johns Hopkins Center for Humanitarian Health and a professor in the Department of International Health at the Bloomberg School, says the situation demands an urgent response from the international community. The guiding biomedical principle of justice also supports immediate international attention to the situation.


Diseases that are preventable with vaccines are making a major comeback throughout the country. Cases of measles and diphtheria, which were rare or nonexistent before the economic crisis, have surged to 9,300 and 2,500 respectively.

Since 2009, confirmed cases of malaria increased from 36,000 to 414,000 in 2017.

The Ministry of Health report from 2017 showed that maternal mortality had shot up by 65 percent in one year — from 456 women who died in 2015 to 756 women in 2016. At the same time, infant mortality rose by 30 percent — from 8,812 children under age 1 dying in 2015 to 11,466 children the following year.

The rate of tuberculosis is the highest it has been in the country in the past four decades, with approximately 13,000 cases in 2017.

New HIV infections and AIDS-related deaths have increased sharply,the researchers write, in large part because the vast majority of HIV-positive Venezuelans no longer have access to antiretroviral medications.

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DRESS CODES
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It’s not only in Afghanistan or the Middle East that dress codes are used to reinforce traditional gender roles and the subjugation of women and girls. 

This recent article in the Washington Post reports on the successful suit of three young plaintiffs against  Charter Day School in North Carolina, which serves kindergarten through the eighth grade and is a tuition-free open-enrollment public school. The girls challenged the school’s requirement that they wear skirts, jumpers, or skorts as part of their school uniforms.  

Note the logo of the Charter Days School: “Excellence Without Excuses.” The language of “no excuses” often indicates that someone is not aware of the ways that universal rules can affect different people differently, and demand more of some than others.

Baker Mitchell, the founder of the Roger Bacon Academy, which runs Charter Day School, defended the code as necessary to “preserve chivalry and respect among young women and men.”   Apparently, he thought that the code would prevent “teen pregnancies” and “casual sex,” while creating a learning environment that “embodied traditional values.” 

In court the school argued that eliminating the “visual cues” of the skirts would undermine respect between the sexes and that the policy was necessary to preserve “order and discipline.” So, one obvious effect of the policy was to teach girls that it is their responsibility not to disturb or provoke boys by dressing inappropriately.  The school seems not to have paid attention to the girls who reported boys looking up their skirts during safety drills that required them to crouch and cover their heads.

U.S. District Court Judge Malcolm Howard, who found the policy unconstitutional, observed that the policy required girls to “pay constant attention to the positioning of their legs during class, distracting them from learning, and has led them to avoid certain activities altogether, such as climbing or playing sports during recess, all for fear of exposing their undergarments and being reprimanded by teachers or teased by boys.” So, the second effect of the policy was to undermine girls’ agency.  Indeed, the only one of the three plaintiffs still attending the school responded to the decision by remarking, “You can really do more in pants than you can in skirts,” she said. “I’m just so happy.”

Unfortunately, this is hardly an isolated incident.  Since 2000, anxiety about the effect of girls’ bodies on boys has spawned a wave of dress codes in U.S. middle schools.  If you’re interested in the issue, I discuss it in Just Life: bioethics and the future of sexual difference, New York: Columbia University Press, 2016, pp. 61-66.

EDITOR’s NOTE: You may also wish to take a look at some of these resources, several of which contain pictures of the kinds of outfits that can get girls sent home from school or forced to wear baggy school-provided t-shirts over their clothes for the rest of the day.

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Bisexual Microaggressions in Medical Contexts
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We recently shared an IJFAB Blog guest blog by Heather Stewart and Lauren Freeman on microaggressions facing transgender folks seeking medical care. In this blog, Heather Stewart focuses on microaggressions facing bisexual persons in medical contexts. Stewart addresses numerous features of how microaggressions can take place when bisexual folks seek medical care, including the well-described phenomenon of “bi erasure.” This piece was first published at the Bisexual Resource Center and is reposted here with the author’s and BRC’s permission.

Bisexual or “bi” identified people are a significant portion of the larger LGBTQ+ community, with studiessuggesting they make up just over half of the larger LBGTQ+ population. Within the bi community itself, there is substantial diversity as well. For example, “bisexual” is the sexual orientation category most self-identified by trans people (25% of trans people identify as bisexual) and people of colour are more likely to identify as bisexual than white people.

Yet, despite representing such a large portion of the LGBTQ+ community, bi people experience routine erasure – they are often lumped in with their gay or lesbian counterparts, or not accounted for at all, and their experiences are often rendered invisible, incomprehensible, and incoherent. Simply put, bisexual people have a difficult time being recognized as bi, and they often have their experiences obscured, questioned, doubted, or dismissed by those around them (including fellow LGBTQ+ community members).

The erasure of bisexual people and their experiences leads to a variety of negative consequences, including lack of social or legal support systems, psychological difficulties pertaining to alienation or lack of belonging, and more. One of the most damaging consequences involves the variety of health disparities experienced by bisexual identified people. Some examples include:

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“Smuggling” of live human embryos into India

A Malaysian man was arrested at Mumbai International Airport for “smuggling” a live human embryo into India. The man had a nitrogen canister containing a single live human embryo. Officials have determined that the embryo was destined for a top in-vitro fertilisation (IVF) clinic run by Dr. Goral Gandhi. The Directorate of Revenue Intelligence (DRI)
had previously raided Gandhi’s clinic on February 16 and seized alleged incriminating documents pertaining to smuggling of embryos.

Surrogacy is illegal in Malaysia which is likely why the embryo was on its way to India. India prohibits the import of human embryos except for research purposes. An Indian Bill passed in 2018 prohibits commercial surrogacy but permits altruistic surrogacy between relatives.

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India has become a hub for both legal and illegal surrogacy. Some IVF specialists believe there is a market for babies with “non-Indian looks” that may be contributing to the smuggling of embryos from other countries. Specialists also indicate that there is an overall lack of laws surrounding assisted reproductive technologies in India.


Experts say illegally importing embryos from foreign countries to use for surrogacy is not that widespread, while others think this is feeding the market for surrogacy or for IVF procedures in which the parents want a child with “non-Indian looks”. The DRI believes there are other IVF clinics which may be involved in the alleged racket and have widened their probe.

IVF experts do think that there’s a gap in regulations and the need for framing laws is urgent. The Indian Express quoted Dr Jaideep Malhotra, president of Indian Society for Assisted Reproduction, as saying that:

“A law is required to regulate import in certain cases. Several Indian couples freeze their egg or embryos abroad. Once they move to India, they wish to continue IVF and bring it back.”

Another specialist reiterated the need for guidelines and said “it is one’s own property and own tissues. They should have free choice to take it wherever they want for IVF.”

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Phrenology
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The image shoes a sketch of a person's face and skull in profile. The skull is divided into areas with labels such as Alimentiveness, Combativeness, Parental Love, and Hope. It is a phrenologist's model of how we could use feeling a person's skull to learn about their inner self.
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I recently listened to a TED talk by a neuroscientist who claims that there is “nothing but biology” and “no free will.”’ He seems to think the only alternative to reductionism is Calvinism.

Putting that aside, if “everything is biology” then he’s caused to think his theory in a way that completely invalidates it. Given other utterly contingent biological causes, he might be caused to think another theory. So much for reason.

It’s not about “free will,” which overemphasizes the factor of choice. This is clear in the rhetoric around abortion: no one “chooses” to have an abortion, as an elective matter. You make decisions in situations where the alternatives all carry harm.

This neuroscientist doesn’t understand what Nietzsche and Heidegger call the necessity of appropriation: Whatever the cause, it is appropriated by the individual. It is taken up in a particular history in a particular way. That’s why poverty or abuse or any other factor, doesn’t predict an individual outcome, whatever the statistical generalizations.

Can we not rid ourselves of this 21st century phrenology, that confuses self-consciousness with a thing?

Cf. Alisdair MacIntyre’s article, “Hegel on Faces and Skulls,” which defeats any attempt to physicalize self-consciousness.

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C-Section Mortality Rates 50x Higher in 22 African countries
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The maternal mortality rate following a C-section in Africa may be 50 times higher than that of high-income countries, according to a study of more than 3,500 mothers from 22 African countries, published in The Lancet Global Health journal. Maternal deaths following C-section in African countries averaged 5.43 per 1000 operations while they average only .1 per 1000 operations in the UK. The study also showed African women were three times more likely to develop complications during surgery than women in the US.

The study also highlighted the lack of specialist care available, with an average of only .7 specialist per 100,000 people. Almost 1 in 4 women received anaesthesia from a non-specialist, which contributes to high mortality rates. The neonatal mortality rate after c-section in Africa was found to be double the global average.

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These findings are very concerning for the key health care principle of justice. While some gaps in quality of care can be expected in low income countries, a maternal mortality rate that is 50x higher is an urgent problem that warrants immediate attention from the international community.

Commenting on the generalisability of their findings to Africa as a whole, the authors note that the study included fewer than half of the countries in Africa and two thirds of the study population were from middle-income countries, whilst several of the continent’s poorest countries were not included. The authors also note that their study includes a disproportionate number of government hospitals, compared with district ones. Government hospitals tend to provide a higher level of care and be better resourced than district hospitals, which typically act as the first providers of care for mothers when giving birth. These factors may mean the maternal mortality rates in the study are conservative.

Writing in a linked comment, Dr Anna J Dare, University of Toronto, comments on the importance of improving C-section provision in Africa: “Despite persistently low reported caesarean section rates in sub-Saharan Africa, caesarean section was still the most common surgical procedure performed in the larger ASOS cohort, making up a third of all operative procedures… As such, a strong argument can be made for coordinated efforts to improve and standardise the quality of care around caesarean delivery, while simultaneously working to improve access… Substantial progress has been made over the past 20 years in reducing maternal mortality, including in Africa, yet global disparities persist across all levels of obstetric care.”

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In Memoriam: Anita Silvers (1940-2019)
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Teresa Blankmeyer Burke, Gallaudet University
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With the permission of Teresa Blankmeyer Burke, and at her request, IJFAB Blog sadly shares Prof. Burke’s obituary for one of feminist bioethics’ great voices, Anita Silvers. This was first published over at the Feminist Philosophers blog. For more on Silvers’ work, see also the American Philosophical Association’s remembrance and her department’s remembrance. In the days since Silvers’ death, this Editor–Alison Reiheld–has seen countless bioethicists whose lives and work add new approaches to our field say that they would never even have pursued bioethics without Silvers’ work and her personal support. Silvers was a an everpresent force in my own life as a young philosopher. Though I doubt she knew me, I certainly knew her, and found her philosophical interventions at talks to be deeply thoughtful and incisive without exception.

Dr. Anita Silvers in her office at San Francisco State University:

The wall behind her is covered with painted masks and framed pictures. Horizontal surfaces bear many statues made of wood and metal and ceramic. Dr. Silvers is looking attentively toward the photographer, her silver hair pulled back, wearing a black turtleneck with a necklace.

We report with sadness the death of Professor Anita Silvers of San Francisco State University on Thursday, March 14, 2019. She was known for her work in aesthetics, bioethics, feminism, philosophy of justice, philosophy of disability, philosophy of law, and social and political philosophy. Dr. Silvers was the author of dozens of articles and author and editor of several books, including Disability, Difference, Discrimination: Perspectives on Justice in Bioethics and Public Policy with David Wasserman and Mary B. Mahowald (Rowman & Littlefield, 1998); Americans with Disabilities: Exploring Implications of the Law for Individuals and Institutions, co-edited with Leslie Francis (Routledge, 2000); and Puzzles About Art co-authored with Margaret Battin, John Fisher, and Ron Moore (St. Martin’s Press, 1989).

In addition to her groundbreaking scholarship, Professor Silvers was a disability rights activist with a storied history of service to the profession. She was longstanding Secretary-Treasurer of the American Philosophical Association (APA) Pacific Division (1982 to 2008), and she chaired the APA Committee on Inclusiveness in the Profession (2010-2013). She was the recipient of numerous awards, including the 2009 APA Quinn Prize for Service to the Profession, the 2013 APA and Phi Beta Kappa Lebowitz Prize for Philosophical Achievement and Contribution, the 2017 California State University (CSU) Wang Family Excellence Award for extraordinary contributions to the CSU system, and the inaugural California Faculty Human Rights Award.

I’ve been at a loss for words since I first learned of Anita’s passing. It was unexpected; she was currently working on several projects with me and also with many others. She was first my advocate, then mentor, then colleague and friend. Feminist Philosophers has a tradition of featuring a passage from the work of the philosopher we memorialize. Anita’s work on disability justice was grounded in her experience as a disabled person and her activism on behalf of people with disabilities. She was a fierce advocate and a brilliant strategist of disability accommodations. I leave you with these words, the conclusion from her essay “Formal Justice”.

Listening to the voices of people with disabilities in their own words quoted throughout this essay, we cannot help but have observed that, foremost, they desire a public sphere that embraces their presence. For them, equality means taking their places as competent contributors to well-ordered cooperative social and cultural transactions. For them, justice must offer, first, the visibility of full participatory citizenship, not a spotlight that targets them as needing more than others do. (Disability, Difference, Discrimination; p. 145)

Information about a memorial service for Professor Silvers will be posted later.

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‘Sick Pregnant Women’ – How to Terrify Research Funders, and Why This Needs to Change
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“Sick pregnant women”: the three little words that can make potential investors in medical research run for the hills.

On Thursday, an article in the Washington Post described the efforts over two years of a team of researchers – including a Nobel laureate and a Harvard University kidney specialist – to gain investor support for a new biotech company that would use cutting-edge science to study a promising new therapy for pre-eclampsia. Despite the high-quality team of expert researchers, and the eagerness of doctors and scientists to get involved, upon hearing the words ‘sick pregnant women,’ investors would lose their nerve. Don’t make eye-contact, back away, slowly, towards the door…

Fear language around sick pregnant women abounds, as in the headline of this 2013 article in Today’s Hospitalist

Pre-eclampsia is a serious complication in pregnancy, with typical onset after 20 weeks and as late as just after childbirth. It is characterised by high blood pressure, the presence of protein in one’s urine, and damage to major organ systems – usually kidneys or liver. It can impair kidney and liver function in the foetus, cause blood clotting problems, lead to fluid on the lungs, placental abruption, or seizures. Pre-eclampsia can also restrict bloodflow to the placenta, leading to smaller or premature babies. If left untreated, it risks the lives of the infant and the mother. It’s an alarmingly common condition; it affects between 3% and 6% of pregnancies in the US, with increased maternal age positively correlating to higher risk. (Ananth et al. 2013)

With this many pregnant women experiencing pre-eclampsia, one might think this would be a high-priority research area. However, the Washington Post article points towards the ongoing cultural nervousness surrounding having pregnant women participate in medical research.

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11-year old forced to give birth via c-section in Argentina, infant dies

On February 26th, an 11-year old girl was forced to give birth via c-section in the Tucumán province of Argentina. The infant, delivered at 23 weeks, has now died.

The young girl, called “Lucia” to protect her identity, discovered she was pregnant on January 23rd after being brought to a first-aid center for stomach pain. It was later revealed that she had been raped by her grandmother’s 65 year old partner. After enduring the trauma of sexual assault, Lucia was forced to endure the additional “torture,” as some are calling it, of being refused an abortion.

Abortion is illegal in Argentina but a 1921 law grants exceptions to women who are victims of rape. However, delays from government officials and conscientious objections from doctors delayed the abortion for five weeks after the initial discovery of the pregnancy, despite pleas from the girl to “remove what the old man put inside me.” At 23 weeks gestation, the decision was made to deliver the infant via c-section.

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Argentina’s strict abortion laws have not lowered rates of abortion, as an abortion is performed every 90 seconds and 450,000 unsafe, illegal abortions are performed each year. Lucia’s case, in which she was denied the basic right to bodily autonomy and forced to have a major surgery against her will, is one more example of Argentina’s abortion laws’ failure to keep women and girls safe.


Prior to the birth of the baby, both the 11-year-old girl and her mother had requested a legal interruption of pregnancy (ILE, Interrupción legal del embarazo), 
Tucumán a las 7 website reported. Instead, the C-section was carried out, apparently in breach of the victim’s rights under the Criminal Code.

According to Tucumán a las 7, a statement from the provincial health system had ordered the hospital’s director Dr. Elizabeth Avila to carry out “the necessary procedures in order to save the two lives.”
A report in 
Clarín, citing one of the doctors who carried out the intervention, said that they had received threats after carrying out the C-section but that the mother was in good health following the procedure. 

The medical professional said those involved had declared themselves “conscientious objectors,” in order to carry out the procedure. The doctor said the C-section had been necessary because an intervention could not be carried out vaginally.

In an interview with Radio Nacional, Cecilia Ousset, a specialist who was present during the birth of the baby, said: “I believe that [Governor of Tucumán] Juan Manzur, due to an electoral issue, prevented the legal interruption of the pregnancy and forced to the child to give birth.” She described the situation as “torture.” 

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China’s reduction in C-section rates uses questionable means

18 years after they were criticized by the World Health Organization for having among the highest c-section rate in the world, China has made a significant shift. China’s government sprang into action in 2001 after WHO criticized their 46% c-section rate. The National Health and Family Planning Commission made reducing C-section rates a national priority in their 10-year plan.

China’s c-section rates are now growing at a rate slower than their peers– a significant change to make in only one generation.

This chart shows China's C-section rate is growing at 6.1% between 2008 and 2014.  Brazil is 8.6 and Turkey is 10.7.  Egypt is 24.2.
IMAGE CREDIT: BBC

Some of the change is attributed to an investment in maternity care and the rise of “wellness” culture among the Chinese middle class. Other tactics are less benign: the punishment of hospitals by the state. Hospitals with c-section rates higher than other hospitals in their area are issued fines, denied state subsidies, and may even have their hospital licenses revoked. Physicians understandably resist c-sections even in cases where the patient desires one. Doctors in China are allowed to go against the wishes of women and deny them birthing choices.

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While c-sections are major surgeries that come with risks, patient reproductive autonomy is also extremely important. It is vital that campaigns to lower c-section rates remain committed to patient rights.

There are now compulsory natural birth and breastfeeding classes, retraining for physicians to strengthen obstetrics skills and more midwifery training institutes. But the most striking difference in China’s approach compared with the rest of the world is just how strictly hospitals are held accountable for their Caesarean-section rates.


“Hospitals which offer delivery in a region are compared against each other and fines are issued if targets are not met,” said Dr Liangkun Ma, senior obstetrician at Peking Union Medical College Hospital. Other penalties include linking state subsidies with C-section rates and revoking hospital licences. In 2012, hospitals with high C-section rates in Hubei province were told they would be shut down and “reformed”.

The changes in China’s guidelines had taken choice in the childbirth process away from Chinese mothers, said Dr. Carine Ronsmans, co-author of a study published in the British Medical Journal (BMJ) in 2018.”Part of government policy is something quite unique to China and is something we in the West would worry about – that is doctors are allowed to go against the will of the woman. In the legal guidelines, not just the clinical guidelines, doctors are told they can go against the woman’s wishes,” she said.


In one case that dominated local headlines last year, an expectant mother in labour, Ma Rongrong, jumped out of a hospital window to her death after she was refused a C-section. More recently, a man was detained for assaulting a medical professional after his wife was denied a C-section.


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Profiling the genomes of embryos? It (almost) doesn’t matter if it works or not
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Jackie Leach Scully is Professor of Social Ethics and Bioethics, Director of the Policy, Ethics and Life Sciences (PEALS) Research Centre at Newcastle University, UK

Earlier in February Erik Parens, Paul Appelbaum and Wendy Chung commented on some of the recent claims made about the possibilities of human genome editing, including the highly controversial announcement by Chinese scientist He Jiankui in November 2018 that he had ‘edited’ the genomes of two babies. Thinking about a possible future of manipulating complex behavioural traits like intelligence, Parens et al nevertheless argue that “the pathways from genes to intelligence are just too complex…. [f]or the foreseeable future, editing embryos to enhance IQ is a sci-fi fantasy.” But they go on to say that embryo profiling, which puts together thousands of gene variants in a polygenic score that supposedly predicts the chances of an embryo showing various characteristics, “could be done today” for something like IQ.

Over decades, commentators have criticized the too-easy jump we make from every modest advance in genetics and genomic science, to a predicted future of babies made to order. They note the problem of using characteristics as proxies for something else: for example, it might be possible to genetically profile an embryo’s IQ, but it’s still not clear exactly what link there is between that and whatever we define as intelligence (what IQ scores measure most accurately is the ability to do IQ tests). There’s also the long-rumbling debate over whether the various characteristics we might want to manipulate genetically – diseases, severe anomalies, perhaps some behavioural traits – are important for a flourishing life, or a good society.

Often, as with the Parens et al piece, the discussion ends by acknowledging that the real capacities of genomic science are still very limited. In fact the more we know about the thousands of gene variants influencing complex traits like IQ, the less certain it is that profiling for ‘intelligence’ will be easy or simple in practice. Others have already noted there is little evidence that the polygenic score profiling currently being offered for human embryos is much more than a scam.

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But I want to highlight a different aspect of the debate. Even if the technology for genetically selecting humans (whether through profiling or editing) turns out to be impossible or just impractical in real life – if it never affects people’s lives in practice very much – it can still have a profound impact.

I’ve been working in the ethics of genetic selection for around 20 years, and in public engagement with those issues for almost as long. The general public, at least in the UK, seem broadly positive about genomic science, although with reservations around its misuse for eugenic purposes or potential for deepening social divisions. But overall they also generally believe that genomic medicine can actually do much more than is really the case. Most people get their science information from the traditional and social media, which inevitably highlight the ‘science can now do this’ at the top of the article and buries the caveats (the ‘not quite yet’ or ‘only in mice’) somewhere nearer the end. As long ago as the early 2000s, many of the public groups I worked with believed that ‘scientists’, somewhere, could already manipulate human embryos to achieve super intelligence, strength, or obedience. And this shaped the way they deliberated about scientific regulation, and their expectations of the kind of lives science could help us live.

Developments in technologies like genomic medicine can cause significant cultural shifts in thinking, irrespective of whether those developments are put into routine practice. Every time there is media and public discussion about how genomic profiling can and should be used to enhance human health and happiness, we normalize both the technology and possible pathways of its use. The idea that it will eventually be used becomes familiar, and so does the acceptance of human traits as appropriate targets for choice and manipulation – even if, in the end, those traits turn out to be harder to manipulate than had been hoped.

Of course, this isn’t an argument against transparent reporting of genomics and continued public debate. It does mean that the debates should also be aware of the wider context and possible effects. Parens et al highlight for example that traditional task of parents, to balance shaping their children while at the same time accepting their unique dispositions and talents, is under enormous pressure from twenty-first century market forces that in turn are likely to influence parental and societal evaluations of the use of genomic selection. It is essential that our ethical deliberations about genomics include consideration to and challenge of the political and economic setting as well as focusing on the scientists’ or parents’ responsibilities.

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Climate change events worsen HIV epidemic for vulnerable African women
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A recent study in Lesotho showed that climate change events such as severe drought have been linked to increased rates of HIV in women. This raises concerns of environmental justice, as vulnerable populations who are not the top contributors to climate change are being affected first and affected the worst. Further, these populations lack the resources to counter the effects of climate change. Women are disproportionately affected as most already occupy positions of vulnerability related to education, poverty, and social status.

The study also reinforces the scope of the effects of climate change and the still unknown full range of its effects on human behavior. This further highlights the inseparability of bioethics and environmental ethics and the need for climate change policies to address increases in disease that are the result of climate events.

Using data collected as part of the Lesotho Population-Based HIV Impact Assessment (LePHIA), a national HIV survey of 12,887 people conducted in 2016 and 2017, the researchers also found that young women aged 15 to 24 in areas affected by drought were more likely to have earlier first-time sex, transactional sex and were less likely to stay in school. 

Previous research had estimated an 11% higher HIV incidence after periods of rain shortfall had negatively affected income generation across the region resulting in changes to human behaviour. More specifically, women may be less worried about protecting themselves from HIV in times of food insecurity, as they may instead choose to focus on getting food on the table.

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There are other concerns around food insecurity as they relate to antiretroviral adherence, or even drug absorption in the body in times of malnutrition, which can, in turn, lead to increases in community viral load, drug resistance and onward transmission of HIV.

Despite these concerns, climate change policies do not often include any measures to intensify HIV treatment and prevention programmes.

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