Tag: Zika

Bioethics Blogs

The First Cut is the Deepest

March 23, 2017

by Sean Philpott-Jones, Chair, Bioethics Program of Clarkson University & Icahn School of Medicine at Mount Sinai

The First Cut is the Deepest

Last week, President Trump publicly unveiled his 2018 budget proposal. If left unchanged, that financial blueprint would increase US federal defense spending by more than $50 billion, while also appropriating billions more to bolster immigration enforcement and build a 2,000 mile-long wall along the US border with Mexico. A self-proclaimed deficit hawk, the President would offset those increased expenditures will sharp cuts to the US Departments of State, Energy, Health and Human Services, and the US Environmental Protection Agency.

In sharp contrast to campaign trail promises to boost the economy, create jobs, and protect Americans at home and abroad, however, Trump’s 2018 budget is likely to do the exact opposite. Consider, for example, the proposal to cut nearly $6 billion from the US National Institutes of Health (NIH).

Made up of 27 different institutions and centers, the NIH is the largest supporter of biomedical research in the world. Through the NIH or other funding agencies, the federal government supports almost half of all the biomedical research in the US. Private businesses support another quarter, and the remainder of biomedical research support comes from state governments and nonprofit organizations.

With an annual operating budget of $30 billion, the NIH provides training and support to thousands of scientists at its main campus in Bethesda, Maryland. Moreover, through a system of extramural grants and cooperative agreements, the NIH provides financial support for research-related programs to over 2,600 institutions around the country, creating more than 300,000 full- and part-time jobs.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

In Pausing Human Research On Zika, Medical Ethicists Acknowledge A Dark Past

This was the proposal: Deliberately infect a small group of consenting adults with the Zika virus to learn about the disease and speed up the search for a vaccine. The need is clear. Zika is an emerging global threat to public health. The disease can be devastating, especially for the babies of mothers who catch it while pregnant

Source: Bioethics Bulletin by the Berman Institute of Bioethics.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Five Ring Circus

In a mere 65 days, almost 10,000 athletes from 204 countries will gather in Rio de Janeiro for the start of the 2016 Summer Olympic Games. An additional 500,000 spectators are expected to file into Rio’s athletic venues, walk its crowded streets, tour its famous monuments and seamy favelas, and frolic on its fabled beaches. Over a hundred thousand more – athletes, staff and tourists – will visit Rio the following month for the 2016 Paralympic Games. At the same time, we have the spread of a disease that remains unchecked, a mosquito-borne virus that is now epidemic in Brazil. Should current rates of transmission remain unchanged, we can predict that thousands of Olympic athletes and spectators will be infected with Zika. Given that it’s not a question of if but when Zika becomes a global crisis, will the World Health Organization (WHO) act responsibly and respond to protect the public health?

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Source: The Bioethics Program Blog, by Union Graduate College & The Icahn School of Medicine at Mount Sinai.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

A review of the incidence of the Zika virus and its ethical aspects

Zika virus ethical aspects and a review  of its incidence

The Zika virus, which we have been reporting on in our Observatory (see HERE), is an arbovirus that is causing health problems on a global scale.

The first epidemic caused by the Zika virus occurred in 2007 on Yap Island, a small island of Micronesia with scarcely 10,000 inhabitants. The second major epidemic took place in 2013 in French Polynesia, a chain of 67 islands with an approximate population of 270,000 inhabitants. In this second epidemic, an association had already been made with a case of Guillain-Barré syndrome.

Zika GlobalInfectDis_2016_8_1_3_176140_u3The highest number of persons infected with the Zika virus in the world occurred in northwest Brazil in May 2015, and the process continues. In October 2015, 14 states in Brazil and the Department of Bolivar, in Colombia, reported new cases of Zika virus infection. By January 2016, Zika virus infection had spread to 20 countries. In February 2016, a relationship was found between Zika virus infection and microcephaly and other neurological diseases. There is now medical evidence that maternal infection in any month of pregnancy may increase the risk of microcephaly, growth delay and foetal death.

The possibility of sexual transmission from Zika-infected semen has also been confirmed. However, it is not known to what extent the sexual transmission of Zika could cause microcephaly.

There is currently no effective treatment, although vaccines are being developed to prevent the infection. As a preventive measure, pregnant women are advised to avoid Zika-endemic regions and sexual intercourse with men who have travelled to these areas (see HERE).

There is no doubt that Zika virus infection is a major medical problem, but it also raises ethical concerns, since abortion is advised in women infected with Zika in order to prevent children being born with microcephaly, and contraceptive techniques are recommended as a preventive measure, both of which can present objective ethical problems.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Happy New Year: Looking Back at 2016 Research Highlights

Happy New Year! While everyone was busy getting ready for the holidays, the journal Science announced its annual compendium of scientific Breakthroughs of the Year. If you missed it, the winner for 2016 was the detection of gravitational waves—tiny ripples in the fabric of spacetime created by the collision of two black holes 1.3 billion years ago! It’s an incredible discovery, and one that Albert Einstein predicted a century ago.

Among the nine other advances that made the first cut for Breakthrough of the Year, several involved the biomedical sciences. As I’ve done in previous years (here and here), I’ll kick off this New Year by taking a quick look of some of the breakthroughs that directly involved NIH support:

DNA analysis and human migration: I highlighted this intriguing advance on my blog last September. All humans trace their ancestry to Africa. But there has been considerable room for debate about exactly when and how many times modern humans departed Africa to take up residence in distant locations throughout the world.

Three new studies—two of which received NIH funding—helped to fill in some of those missing pages of our evolutionary history [1-3]. The genomic evidence suggests that the earliest human inhabitants of Eurasia came from Africa and began to diverge genetically at least 50,000 years ago. While the new studies differ somewhat in their conclusions, the findings also lend support to the notion that our modern human ancestors dispersed out of Africa primarily in a single migratory event. If an earlier and ultimately failed dispersion occurred, it left little trace in the genomes of people alive today.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Happy New Year!

As I sit to write this blog, 2016 is nearing its end. It seems like many people are quite happy about this prospect. I must admit, the year became rather wearying at points with all of its ups and downs. I took a few moments to reflect upon my blogs from the past year. Zika, physician-assisted death, and pharmaceutical prices were some of things I… // Read More »

Bioethics Blogs

Modern Pregnancies and (Im)Perfect Babies

by Stephanie A. Kraft, JD

The modern experience of pregnancy is distinctly “not your mother’s pregnancy”. Ever-expanding options for carrier, prenatal, and newborn screening offer today’s pregnant women countless choices when it comes to genetic testing—choices that were unheard of, even unfathomable, just a generation ago.

Prenatal screening and diagnosis have long challenged the tension between individual reproductive autonomy and society-wide respect for persons with disabilities. New genetic and genomic technologies have the potential to either heighten or relieve this tension, depending (in part) on how they are implemented. Shakespeare argues that the advent of prenatal whole genome sequencing can remind us that “everyone is potentially disabled” due to one genetic mutation or another, but at the same time he cautions that the widespread use of this technology may lead parents to focus on individual genetic imperfections rather than accepting their children as the “flawed, vulnerable, limited and mortal” people that they are. “No baby is perfect,” he writes as a reminder to the modern pregnant woman who might be considering how to navigate her prenatal genomic options.

As a modern pregnant woman myself, I read Chen and Wasserman’s target article with both academic and personal interest. Chen and Wasserman propose an unrestricted framework, bolstered by a robust informed consent process, for the eventual clinical implementation of noninvasive prenatal whole genome sequencing (NIPW). They argue that by not limiting testing by severity of conditions, their approach will neither devalue the lives of individuals with disabilities nor encroach on reproductive autonomy. Some commentators applaud their framework’s potential to minimize biases against people who have subjectively “bad” genetic conditions. Others, however, challenge the proposal for its unrealistic view of the clinical, regulatory, and sociological context in which it is intended to operate.

In reading Chen and Wasserman’s article, I found myself wondering how their proposal would have played out in my own pregnancy. While they raise an important conversation for those thinking about the future of prenatal—as well as carrier and newborn—screening, I couldn’t help but feel that the conversation was missing the voice of a key stakeholder group: pregnant women. I thought about the questions I asked my doctor, the conversations I had with other women in my prenatal yoga class, the message boards I read on my trusty pregnancy app. None of the women I interacted with seemed to be concerned with having a genetically “perfect” child, but rather with setting up their child, imperfections and all, to have the best life they could offer. Most had other things on their minds besides their fetus’s genome: choosing a name, avoiding the Zika virus, dealing with aches and pains (and nausea and heartburn and swelling), finding high-quality child care. Among the countless things pregnant women already worry about—or are told we should be worrying about—NIPW, it seemed, would not rise very high on the list for most of us.

While only anecdotal, this apparent lack of interest in genome sequencing made me wonder, as Munthe does, whether NIPW is truly a priority for even the most modern pregnant woman. Several commentators similarly note a lack of demand for NIPW. It may be true, as Chen and Wasserman suggest, that prospective parents would be inclined to get NIPW if it were available (and covered by insurance), but Kaposy contends that the demand for much prenatal genetic testing comes not from pregnant women and their partners, but rather from corporate promotion of the technology. Yet Chen and Wasserman’s proposal includes no efforts to counterbalance the impact of corporate messaging or other external pressures. Instead, they premise their proposal on the goal of “enhancing the autonomy of prospective parents” by means of a rigorous, multistage informed consent process.

Genetic counseling and robust informed consent processes, including the use of decision aids, can certainly be valuable support tools for autonomous decision making. However, it does not follow that simply offering patients testing for an unrestricted list of conditions and giving them access to huge quantities of information will enhance reproductive autonomy. Instead, Chen and Wasserman’s focus on individual decision making shifts the full burden of this weighty choice onto patients’ shoulders, with minimal professional guidance to relieve that burden. If their proposal is to support patient autonomy in practice rather than just in theory, it must take into consideration patients’ perspectives on and preferences for making these decisions. For example, it may prove to be more supportive of reproductive autonomy if professional medical organizations develop guidelines for a standard panel, perhaps mirroring Chen and Wasserman’s “default” option, while still encouraging patients to make their own choices and allowing the opportunity to obtain additional testing as they see fit. Such an approach would recognize that decision-making support can be an important part of an autonomous choice for many patients.

As pregnant women are faced with increasingly numerous and complex choices, choices our mothers and even our older sisters and cousins didn’t face, it is important to think critically about what kind of tools can help patients navigate this era of modern pregnancy and its sometimes overwhelming options. In starting this conversation, Chen and Wasserman are right to argue that these tools, whether decision aids, professional guidelines, or something else, should not be designed to help prospective parents in the futile pursuit to have a “perfect” baby. Instead, they should simply offer a little extra support for people who are just trying to figure out how to be better parents to their perfectly imperfect babies.

This post can also be found in the January 2017 issue of The American Journal of Bioethics where you will find several others articles on this topic.

Bioethics News

CDC Allocates $184 Million for Zika Protection

December 22, 2016

(UPI) – Nearly $184 million has been earmarked to protect Americans against Zika virus infection, the U.S. Centers for Disease Control and Prevention announced Thursday. The funding will go to states, territories, local governments and universities. It’s part of $350 million awarded to the CDC by Congress earlier in 2016 for Zika response and preparedness, the agency said.

Bioethics News

Zika-Linked Birth Defects More Severe Than Previously Thought, UCLA Researchers Finds

December 20, 2016

(Managed Care Magazine) – A study led by investigators at the University of California, Los Angeles, has found that Zika-linked abnormalities that occur in human fetuses are more extensive—and more severe—than previously thought, with 46% of 125 pregnancies among Zika-infected women resulting in birth defects in newborns or ending in fetal death. The findings, published in the New England Journal of Medicine, suggest that damage during fetal development from the mosquito-borne virus can occur throughout pregnancy and that other birth defects are more common than microcephaly.