Tag: rights

Bioethics Blogs

Reproducing the Speculative: Reproductive Technology, Education, and Science Fiction by Kaitlyn Sherman

Walter, a Synthetic, quietly makes his rounds in the brightly lit, pristine interior of the Covenant, a Weyland Corporation Spaceship. Fingers pressed to the translucent, impermeable glass, he checks the status of each crew member as they rest in their cryochambers, suspended in chemically-induced comas until they reach their destined planet in seven years and four months’ time. The ship’s artificial intelligence system, Mother, chimes, “Seven bells and all is well.” Reassured of their security, Walter moves on to the next zone, where another 2,000 cryochambers contain sleeping colonists from Earth. This zone also features a panel of drawers, each housing dozens of embryos—over 1,100 second-generation colonists. They are packed individually into river-stone sized ovoids; clear, solid, egg-like. Amid the rows, an embryo has died, and its artificial uterine-sack is clouded and dark. Observing it briefly, Walter takes it from its socket with a set of tongs and places it into a biohazard bin. The Covenant is on a mission to colonize a habitable, distant planet. Their ship contains everything that could be useful in setting up a new colony: terraforming vehicles, construction materials, and human life itself. Even though these frozen embryos aren’t yet actively developing, they reflect a technology that allows for such a feat, while ensuring a population boom that is not dependent upon the limited space of mature female colonists’ wombs.

This scene is part of the opening sequence of the latest film in Ridley Scott’s Alien franchise. Alien: Covenant (2017) is the most recent science fiction film to illustrate advances in reproductive technologies, especially that of ectogenesis, or external gestation and birth.

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

Doctors Plan Bold Test of Gene Therapy on Boys with Muscular Dystrophy

August 17, 2017

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In 1990, a British muscular dystrophy researcher, Kay Davies, described the unusual case of a 61-year-old man who by rights should not have been alive, based on what was known of the disease at that time.

The muscle wasting disease is caused by mutations to the dystrophin gene. Even just one wrong genetic letter can mean early death. Remarkably, the man Davies described was missing 46 percent of the gene. Yet there he was, still walking with the aid of a stick in his seventh decade.

Now that 27-year-old discovery is leading to what could be the best chance to treat—and maybe stop—a serious form of the disease, Duchenne muscular dystrophy.

… Read More

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MIT Technology Review

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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 News

Many Nurses Lack Knowledge of Health Risks for New Mothers, Study Finds

August 17, 2017

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In recent months, mothers who nearly died in the hours and days after giving birth have repeatedly told ProPublica and NPR that their doctors and nurses were often slow to recognize the warning signs that their bodies weren’t healing properly. Now, an eye-opening new study substantiates some of these concerns.

The nationwide survey of 372 postpartum nurses, published Tuesday in the MCN/American Journal of Maternal/Child Nursing, found that many of them were ill-informed about the dangers new mothers face. Needing more education themselves, they were unable to fulfill their critical role of educating moms about symptoms like painful swelling, headaches, heavy bleeding and breathing problems that could indicate potentially life-threatening complications.

By failing to alert new mothers to such risks, the peer-reviewed study found, nurses may be missing an opportunity to help reduce the maternal mortality rate in the U.S., the highest among affluent nations. An estimated 700 to 900 women die in the U.S. every year from pregnancy- and childbirth-related causes and 65,000 nearly die, according to the Centers for Disease Control. The rates are highest for black mothers and women in rural areas. In a recent CDC Foundation analysis of data from four states, nearly 60 percent of maternal deaths were preventable.

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Image via flickr: AttributionNoncommercial Some rights reserved by Pan American Health Organization PAHO

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ProPublica NPR

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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

What the Present Debate About Autonomous Weapons is Getting Wrong

Author: Michael Robillard

Many people are deeply worried about the prospect of autonomous weapons systems (AWS). Many of these worries are merely contingent, having to do with issues like unchecked proliferation or potential state abuse. Several philosophers, however, have advanced a stronger claim, arguing that there is, in principle, something morally wrong with the use of AWS independent of these more pragmatic concerns. Some have argued, explicitly or tacitly, that the use of AWS is inherently morally problematic in virtue of a so-called ‘responsibility gap’ that their use necessarily entails.

We can summarise this thesis as follows:

  1. In order to wage war ethically, we must be able to justly hold someone morally responsible for the harms caused in war.
  2. Neither the programmers of an AWS nor its military implementers could justly be held morally responsible for the battlefield harms caused by AWS.
  3. We could not, as a matter of conceptual possibility, hold an AWS itself morally responsible for its actions, including its actions that cause harms in war.
  4. Hence, a morally problematic ‘gap’ in moral responsibility is created, thereby making it impermissible to wage war through the use of AWS.

This thesis is mistaken. This is so for the simple reason that, at the end of the day, the AWS is an agent in the morally relevant sense or it isn’t.

If it isn’t, then premise 2 is either false and moral responsibility falls on the persons within the causal chain to the extent that they knew or should have known the harm they were contributing to and the degree to which they could have done otherwise, or premise 2 is true but vacuous because the harm was a result of a genuine accident.

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

Consumer Bill of Rights and Responsibilities – 20 Years Later

20 years ago, the Presidential Advisory Commission on Consumer Protection and Quality in the Health Care Industry released its report Consumer Bill of Rights and Responsibilities.  A key message in the report is to make healthcare information…

Source: bioethics.net, a blog maintained by the editorial staff of The American Journal 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 News

CRISPR, Pigs, Organs, Ethics: Some Key Considerations

Michael S. Dauber, M.A., GBI Visiting Scholar

Luhan Yang and members of her research team at eGenesis have taken a crucial step in growing organs in animals that may be used to provide organs for therapeutic transplants in humans, according to a study published in Science Magazine on Thursday, August 10th. Researchers involved in the study used CRISPR, a genetic editing technique, to “knock out” 25 genes that cause porcine endogenous retroviruses (sometimes referred to as “PERV genes”) that make ordinary pig organs unsuitable for transplants because PERVs can infect human transplant recipients. The result was the birth of 37 baby pigs without PERV genes.

The move comes at a time when CRISPR experiments are becoming increasingly popular. Last week, a team led by Shoukhrat Mitalipov published the results of the first successful attempt to modify human embryos using CRISPR by American scientists in Nature. The researchers successfully deleted a gene responsible for several fatal heart conditions.

While the results are a significant step in developing techniques for growing organs suitable for human transplantation, scientists must still travel a long road before any human patients will receive such organs. Researchers will need to determine whether or not organs from pigs developed using CRISPR can be safely and effectively transplanted into other animals first. Another hurdle is the cost and complexity of the technique: Yang’s experiments with her team involved embryos produced through cloning, an expensive technique that is not always completely effective: indeed, in Yang’s study, only a few of the cloned embryos were viable.

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

Protecting My Son Meant Wishing for His Death

August 11, 2017

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I tell him that Miles has been a joyful son to have, my firstborn child. That from the beginning he has been quick, bright, an adventurer, a risk-taker. That one of the things that has defined him has been his brain. He got a first-class degree from Oxford. At 24 he was selected as one of five young people to represent Britain during the European Parliament’s Youth Convention. He started his own tech company at 26. He is writing a book in his spare time. He rides a motorbike, he sky dives, he dives with sharks. He practices qigong. He makes electronic music, he writes poetry. He is irascible, funny, kind, down to earth. He loves life, attacks it head on, dangerously, seeking adrenaline, sometimes foolhardy, learning from his flaws while exploring, always, his spiritual resources.

I am boasting about my son. But it is important the doctor should know about Miles’s brain, the brain that he and his team are now responsible for.

It is universally understood that a primal maternal instinct is to protect one’s young. To will the death of your child would appear to be a reversal of that instinct. But, as I found out, it can be the extension of it.

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Image via Flickr AttributionNoncommercialShare Alike Some rights reserved by A3Format

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NYTimes Well

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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

Charlie Gard: An Ethical Analysis of a Legal non-Problem

(Cross-posted from EJIL: Talk!)

For those with an internet connection and an interest in current affairs, the story of Charlie Gard been hard to avoid recently.  A decent précis is available here; but it’s worth rehearsing.

Shortly after his birth, Charlie’s health began to deteriorate, and he was diagnosed with a terminal and incurable mitochondrial DNA depletion syndrome.  By March 2017, Charlie needed artificial ventilation, and doctors at Great Ormond Street Children’s Hospital (GOSH) applied to the High Court for confirmation that removing that ventilation would be lawful, having judged that it was not in his best interests.  This was contested by his parents, Chris Gard and Connie Yates; the High Court ruled in favour of GOSH.  This was confirmed by the Supreme Court and the European Court of Human Rights.  During all this time, Charlie remained ventilated.

In the High Court, Mr Justice Francis said that his decision was subject to revision should new evidence emerge favouring continued treatment; in July, Charlie’s parents returned to the High Court, claiming that Charlie might benefit from an experimental treatment being offered by Professor Michio Hirano of Columbia University.  However, as proceedings advanced, it became clear that Hirano’s proposed treatment had never been used on patients like Charlie, that he had neither seen Charlie nor read his notes when he offered the treatment, and that he had a financial interest in that treatment.  The position statement issued by GOSH on the 24th July barely hides the hospital’s legal team’s exasperation.  On the 24th July, Charlie’s parents dropped their request for continued treatment.  The details of Charlie’s palliative care were still disputed; his parents wanted it to be provided at home, with ventilation maintained for a few days.  The High Court ruled against this on the 27th July.  Charlie was moved to a hospice; his ventilator was removed, and he died on the 28th July, a few days before his first birthday.

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

Widowed Early, A Cancer Doctor Writes About The Harm Of Medical Debt

August 10, 2017

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How she got from there to here is a story about how health care and money are intertwined in ways that doctors and patients don’t like to talk about.

But Chino is determined to do so.

“I think of him every day,” Chino says of her late husband, Andrew Ladd. “It drives me to do the type of research that I do — that’s looking at the financial toxicity of cancer care.”

Chino is co-author of a research letter, published Thursday in JAMA Oncology, that shows that some cancer patients, even with insurance, spend about a third of their household income on out-of-pocket health care costs outside of insurance premiums.

It’s an issue Chino knows well.

… Read More

Image via Flickr AttributionNoncommercialShare Alike Some rights reserved by See-ming Lee 李思明 SML

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NPR Shots

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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

Whatever Happened to Long-Term Care Reform?

From the Trenches: A Prescription for Change

I have enjoyed looking at the pictures of protestors being arrested in our nation’s capital. I concur with many commentators who credit the civil disobedience of the protestors – many of whom are members of the disability rights activist group ADAPT – with the defeat of the Senate bill to abolish the Affordable Care Act. It’s also been fun because I know so many people in the photos.

The Affordable Care Act was a massive piece of legislation. The complexities and moving parts are best understood by people who have very closely followed or implemented the law. I generally think of the ACA as three things:

1. Reform of the private insurance market with the goal of providing greater access to insurance coverage;

2. Changes to Medicare, such as closing the prescription drug donut hole; and

3. Changes to Medicaid. 

Mike Oxford, Executive Director for Policy at the Topeka Independent Living Resource Center and a member of the national chapter of ADAPT, was one of many who protested against the Senate bill to repeal the Affordable Care Act.

Community Services Optional?

The Medicaid issue that has drawn the most attention is the matter of expanding access, appropriately called “Medicaid expansion.” But the law contains other Medicaid provisions as well. It provides incentives for states to continue to “re-balance” their systems of providing long-term care. “Re-balance” is often mentioned in quotation marks because states were never in balance. Nonetheless, through the ACA, states were provided additional federal matching funds if they would transfer more long-term care to community services and away from institutions, such as nursing homes.

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.