Tag: disability

Bioethics Blogs

The Neuroethics Blog Series on Black Mirror: White Bear

By Kristie Garza

Humans in the 21st century have an intimate relationship with technology. Much of our lives are spent being informed and entertained by screens. Technological advancements in science and medicine have helped and healed in ways we previously couldn’t dream of. But what unanticipated consequences of the rapid expansion into new technological territory? This question is continually being explored in the British sci-fi TV series Black Mirror, which provides a glimpse into the not-so-distant future and warns us to be mindful of how we treat our technology and how it can affect us in return. This piece is part of a series of posts that discuss ethical issues surrounding neuro-technologies featured in the show and will compare how similar technologies are impacting us in the real world.

*SPOILER ALERT* – The following contains plot spoilers for the Netflix television series Black Mirror.

Plot Summary

“White Bear” begins with Victoria, the episode’s main character, awakening in an unfamiliar room in front of a TV displaying an unfamiliar symbol. She has no memory of who she is or how she wound up in the room.

Afraid, Victoria begins to explore her outside surroundings, where she finds “onlookers,” individuals in a trance-like state, filming her with their phones. A masked man then appears and begins chasing Victoria. While fleeing, she meets Jem, a fellow individual not under the trance. Jem explains to Victoria that the onlookers were put in their trance due to the strange symbol on the screens and that the masked man is a “hunter,” part of an evil people not affected by the strange symbol.

Bioethics Blogs

In the Journals – August 2017 by Livia Garofalo

Here is the article round-up for August, put together in collaboration with Ann Marie Thornburg. There is a special issue section of Social Science and Medicine out this month on Austerity, Health, and Wellbeing (abstracts below). Also of note is a recent ‘Takes a Stand’ statement on the End of AIDS published in Global Public Health by Nora Kenworthy, Richard Parker, and Matthew Thomann. You can take advantage of the article being temporarily free access and on early view here. Enjoy!

Cultural Anthropology (Open Access)

Tangles of Care: Killing Goats to Save Tortoises on the Galápagos Islands

Paolo Bocci

If calls to care for other species multiply in a time of global and local environmental crisis, this article demonstrates that caring practices are not always as benevolent or irenic as imagined. To save endemic tortoises from the menace of extinction, Proyecto Isabela killed more than two hundred thousand goats on the Galápagos Islands in the largest mammal eradication campaign in the world. While anthropologists have looked at human engagements with unwanted species as habitual and even pleasurable, I discuss an exceptional intervention that was ethically inflected toward saving an endemic species, yet also controversial and distressing. Exploring eradication’s biological, ecological, and political implications and discussing opposing practices of care for goats among residents, I move past the recognition that humans live in a multispecies world and point to the contentious nature of living with nonhuman others. I go on to argue that realizing competing forms of care may help conservation measures—and, indeed, life in the Anthropocene—to move beyond the logic of success and failure toward an open-ended commitment to the more-than-human.

Bioethics Blogs

Teaching Disability Studies in the Era of Trump by Pamela Block

In spring semester of 2017 we (Pam Block and Michele Friedner) co-taught the graduate course “Conceptual Foundations of Disability Studies.” Though the readings were the same as in previous iterations of the course, the emphasis and tone of the class shifted, not just because of the co-teaching but because we were now teaching in a context in which the rights and lives of disabled people are at increased risk. This essay will focus on one class session devoted to a discussion of how disability studies and eugenics are strikingly intertwined in some ways, and why it is salient and important to think about eugenics in the present moment, especially in relation to the current United States presidency.

Eugenics opens up a way to talk about immigration; traits and qualities of and in people; desirability; deservedness; “good” and “bad” science; and the making of facts. Eugenics comes to mind when we think of silencing and containing nasty women and ejecting bad hombres. While we are not arguing that Trump himself advocates eugenics, we argue that a study of the history of eugenics offers an entry point to considering the emergence of past and present norms and normals, especially in relation to perspectives on bodily variation. We also think that a discussion of eugenics affords different ways of conceptualizing what disability studies scholars Snyder and Mitchell (2010) call “able-nationalism,” (riffing off of Puar’s (2007) work on homonationalism). That is, a discussion of eugenics allows for consideration of how disability—and the values attached to it– is mobilized in different time periods, in the service to the nation.

Bioethics News

China’s Embrace of Embryo Selection Raises Thorny Questions

August 16, 2017

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Getting time with Qiao Jie is not easy. At 7:30 a.m., the line coming out of the fertility centre that she runs blocks the doorway and extends some 80 metres down the street. Inside, about 50 physicians on her team are discussing recent findings, but Qiao, a fertility specialist and president of Peking University Third Hospital in Beijing, is still in an early-morning consult.

When she finally emerges, she jumps to the topic at hand: spreading awareness of preimplantation genetic diagnosis (PGD), a procedure that helps couples undergoing in vitro fertilization (IVF) to avoid passing on genetic mutations that could cause disease or disability in their children. Qiao typically refuses interview requests, but she’s concerned that people aren’t getting the message about PGD fast enough. “Now, more and more diseases can be stopped — if not immediately, in the generation after next,” she says.

Early experiments are beginning to show how genome-editing technologies such as CRISPR might one day fix disease-causing mutations before embryos are implanted. But refining the techniques and getting regulatory approval will take years. PGD has already helped thousands of couples. And whereas the expansion of PGD around the world has generally been slow, in China, it is starting to explode.

Image: By Zephyris at the English language Wikipedia, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=5971161

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Nature News

Tags: bioethics, china, disease, eradication, genetics, genome, health policy, PGD, public health, screening

Bioethics Blogs

Quinlan at 40: Exploring the Right to Die in the U.S.

In November 2016, the Georgia State University College of Law hosted a symposium: “Quinlan at 40: Exploring the Right to Die in the U.S.”

Four published articles from this symposium are now available from the law review’s website.

Distinctive Factors Affecting the Legal Context of End-Of-Life Medical Care For Older Persons
Marshall B. Kapp

Ending-Life Decisions: Some Disability Perspectives
Mary Crossley

Unbefriended And Unrepresented: Better Medical Decision Making For Incapacitated Patients Without Healthcare Surrogates
Thaddeus Mason Pope

2016-2017 Georgia State University Law Review Symposium: Exploring the Right To Die In The U.S.
Margaret Pabst Battin

Bioethics Blogs

CRISPR and Identity

Dr. Joel Reynolds, a postdoctoral fellow at The Hastings Center recently wrote a very poignant essay in Time magazine arguing that our increasing ability to edit our own genetic code risks eventually eliminating the very genetic code that results in people like his younger brother Jason, who was born with muscle-eye-brain disease, resulting in muscular dystrophy, hydrocephalus, cerebral palsy, severe nearsightedness and intellectual disability. In… // Read More »

Bioethics News

Gene Editing Might Mean My Brother Would’ve Never Existed

August 10, 2017

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Responses to this feat followed well-trodden trails. Hype over “designer babies.” Hope over new tools to cure and curb disease. Some spin, some substance and a good dose of science-speak. But for me, this breakthrough is not just about science or medicine or the future of humankind. It’s about faith and family, love and loss. Most of all, it’s about the life and memory of my brother.

Jason was born with muscle-eye-brain disease. In his case, this included muscular dystrophy, cerebral palsy, severe nearsightedness, hydrocephalus and intellectual disability. He lived past his first year thanks to marvels of modern medicine. A shunt surgery to drain excess cerebrospinal fluid building up around his brain took six attempts, but the seventh succeeded. Aside from those surgeries’ complications and intermittent illnesses due to a less-than-robust immune system, Jason was healthy. Healthy and happy — very happy. His smile could light up a room. Yet, that didn’t stop people from thinking that his disability made him worse off. My family and those in our religious community prayed for Jason. Strangers regularly came up to test their fervor. Prayer “circles” frequently had his name on their lists. We wanted him to be healed. But I now wonder: What, precisely, were we praying for?

Image via TIME The author (left), with his brother Jason Courtesy of Joel Reynolds

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TIME

Tags: ableist, bioethics, disability, experience, gene-editing, loss, relationships

Bioethics Blogs

The Neuroethics Blog Series on Black Mirror: The Entire History of You

By Somnath Das

Somnath Das recently graduated from Emory University where he majored in Neuroscience and Chemistry. He will be attending medical school at Thomas Jefferson University starting in the Fall of 2017. The son of two Indian immigrants, he developed an interest in healthcare after observing how his extended family sought help from India’s healthcare system to seek relief from chronic illnesses. Somnath’s interest in medicine currently focuses on understanding the social construction of health and healthcare delivery. Studying Neuroethics has allowed him to combine his love for neuroscience, his interest in medicine, and his wish to help others into a multidisciplinary, rewarding practice of scholarship which to this day enriches how he views both developing neurotechnologies and the world around him.

Humans in the 21st century have an intimate relationship with technology. Much of our lives are spent being informed and entertained by screens. Technological advancements in science and medicine have helped and healed in ways we previously couldn’t dream of. But what unanticipated consequences may be lurking behind our rapid expansion into new technological territory? This question is continually being explored in the British sci-fi TV series Black Mirror, which provides a glimpse into the not-so-distant future and warns us to be mindful of how we treat our technology and how it can affect us in return. This piece is part of a series of posts that will discuss ethical issues surrounding neuro-technologies featured in the show and will compare how similar technologies are impacting us in the real world.

*SPOILER ALERT* – The following contains plot spoilers for the Netflix television series Black Mirror.

Bioethics News

American CRISPR Experiments and the Future of Regulation

By Michael S. Dauber, MA, GBI Visiting Scholar

According to a report in The MIT Technology Review, researchers in a lab based in Portland, Oregon have successfully created genetically modified human embryos for the first time in U.S. history, using a technique called CRISPR. The project, directed by Shoukhrat Mitalipov, a researcher at Oregon Health and Science University, was published in Nature, and consisted of modifying the genes of human embryos to prevent a severe, genetically inherited heart condition. The embryos were destroyed several days after the experiments.

CRISPR stands for “clustered, regularly interspaced, short palindromic repeats.” It is a genetic editing technique that allows scientists to cut out pieces of DNA and replace them with other pieces. CRISPR originated as a naturally occurring cellular defense system in certain bacterial that allows a cell to defend itself from foreign genetic material injected into cells by viruses. RNA strands that match the problematic genes bind with the piece of DNA to be removed, and enzymes work to remove the defective material. When CRISPR is used to edit the human genome, scientists apply CRISPR RNA strands and the corresponding enzymes that match the genes they wish to edit in order to extract the problematic genes.

Mitalipov is not the first scientist to use CRISPR to edit the human genome. Scientists in China have been using the technique in research using human embryos dating back to 2015. One notable study consisted of attempts to make cells resistant to HIV. Another controversial study involved the injection of CRISPR-modified cells into a patient with advanced lung cancer.

Bioethics Blogs

In the Journals – July 2017 by Danya Glabau