Tag: children

Bioethics Blogs

An Assessment of Mitochondrial Replacement Therapy

By: Alexa Woodward

Last year, a baby boy was born from an embryo that underwent mitochondrial replacement therapy (MRT). MRT was used to prevent this child from inheriting a mitochondrial disease from his mother, specifically infantile subacute necrotizing encephalomyelopathy – a disease that affects the central nervous system and usually results in death within the first few years of life. While controversial, assisted reproductive technologies (ARTs) such as MRT provide prospective parents with additional options and have the potential to improve the quality of human life by preventing disease.

This story is of bioethical interest because this technique results in germline modification, which is the alteration of DNA in the reproductive cells of humans that will be passed on to their offspring. Implementing MRT in humans has consequentially garnered much criticism, from simple health-related implications (such as unknown harms to potential offspring and eugenics concerns) to the futuristic next logical step of scientific intervention; directly editing the nuclear genome.

With MRT, modifications affect the mitochondrial genome (mtDNA), not the nuclear genome. Researchers emphasize the lack of bearing that mtDNA has on personal characteristics and the overall maintenance of “genetic integrity,” especially when compared to using the whole donor egg with an “unrelated” nuclear genome.1 Even so, additional concerns arise regarding the long-term anthropological effects, blurring the distinction between therapy and enhancement, and issues of resource allocation.

Mutations and deletions  in the mitochondrial genome can result in mitochondrial diseases affecting the neurological, musculoskeletal, cardiac, gastrointestinal, renal, and other systems, all of which are incurable.  MRT uses the intended parents’ nuclear DNA in conjunction with a donor’s mitochondria.

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

Open ethical debate: Are gene editing techniques ethical in reproductive medicine?

Author’s opinion: The use of these techniques is currently medically and ethically unjustifiable.

The United Kingdom has recently approved mitochondrial transfer (3 parents children) to prevent the development of mitochondrial diseases in the children of mothers affected by these types of conditions (See HERE). This has opened an ethical debate on the use of such techniques, especially if they can modify the germline.

Now, a recent article has addressed their use in the field of reproductive medicine and discussed their use in infertility treatment and disease prevention (see HERE).

It is well known that the efficacy of assisted reproduction techniques is limited, with pregnancy rates when in vitro fertilisation is used of 29.1% per aspiration cycle and 33.2% per embryo transferred; when intracytoplasmic sperm injection is used, these rates are 27.9% and 31.8%, respectively.

It is therefore thought that identifying possible genetic abnormalities and then applying personalised medicine could improve these figures. It is also believed that they could help to resolve human infertility, since half of the cases are thought to be due to a genetic cause, and could be remedied by correcting the corresponding mutation responsible for infertility using genome editing. This has already been applied in different cases of genetic mutations in sperm in the case of azoospermia.

Gene editing in reproductive medicine

However, in the author’s opinion, the use of these techniques is currently medically and ethically unjustifiable for three reasons. First of all, there is still very little experience in genetic modification in humans, as fewer than ten products have been approved for use in these diseases.

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

Food Security & Nutrition in Timor-Leste

Q&A with Becky McLaren

 

Can you briefly describe the Timor-Leste project and your recent visit to the country?

 

The project is a strategic review of the food security and nutrition situation in Timor-Leste. We’re working with the World Food Programme, which has done similar work in other countries. We’re evaluating what’s been done in the past and what’s currently going on in order to make recommendations for future work. Our review is framed around the Sustainable Development Goals (SDGs), specifically SDG 2 which aims to end hunger worldwide by 2030.

 

Our recent trip was an opportunity to develop relationships with our different collaborators, including our main partner in the review, CEPAD; build an outline for the project’s next steps; and meet other stakeholders – government, international and local NGOs, and civil society organizations.

 

Can you tell us about some of the unique nutrition and food security challenges facing Timor-Leste?

 

Timor-Leste is a post-conflict country which is still in the window of peacebuilding and becoming more stable. The country was colonized by Portugal until 1975 and then occupied by Indonesia until the UN helped it achieve independence in 2002. There was a reemergence of conflict in 2006, and UN peacekeepers maintained a presence in Timor-Leste until 2012. At the present, the country has a unique opportunity to move beyond creating a stable government and into building food and nutrition security. The government has the chance to restructure the agriculture and food systems.

 

Timor-Leste also has serious nutrition challenges, with one of the highest stunting rates in the world.

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

Missing Genes Point to Possible Drug Targets

Every person’s genetic blueprint, or genome, is unique because of variations that occasionally occur in our DNA sequences. Most of those are passed on to us from our parents. But not all variations are inherited—each of us carries 60 to 100 “new mutations” that happened for the first time in us. Some of those variations can knock out the function of a gene in ways that lead to disease or other serious health problems, particularly in people unlucky enough to have two malfunctioning copies of the same gene. Recently, scientists have begun to identify rare individuals who have loss-of-function variations that actually seem to improve their health—extraordinary discoveries that may help us understand how genes work as well as yield promising new drug targets that may benefit everyone.

In a study published in the journal Nature, a team partially funded by NIH sequenced all 18,000 protein-coding genes in more than 10,500 adults living in Pakistan [1]. After finding that more than 17 percent of the participants had at least one gene completely “knocked out,” researchers could set about analyzing what consequences—good, bad, or neutral—those loss-of-function variations had on their health and well-being.

Gene knockouts are expected to occur more frequently in certain countries, such as Pakistan, where people sometimes marry and have children with their first cousins. That makes it much more likely that a person carrying a loss-of-function gene variation will have inherited that same variation from both of their parents.

In the latest study, a team led by Sekar Kathiresan at the Broad Institute of Harvard and MIT, Boston, turned to the Pakistan Rise of Myocardial Infarction Study (PROMIS) in hopes of finding more gene knockouts.

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

Breakthrough Immunotherapies Seem Like a Dream Come True for Children with Leukemia

Guest Post: Nancy Jecker, Aaron Wightman, Abby Rosenberg, Doug Diekema

Paper: From protection to entitlement: selecting research subjects for early phase clinical trials involving breakthrough therapies

A breakthrough therapy to cure cancer in children suffering from acute lymphoblastic leukemia (ALL) is a dream for many families.  New immunotherapies appear to make this dream a reality. Such therapies use a person’s own immune cells to recognize and combat their disease. In the largest study to date of ALL patients treated with a form of immunotherapy known as Chimeric Antigen Receptor (CAR) T-Cell therapy, a 93% remission rate was reported. Such results are a glimmer of hope for those whose prognoses were previously considered very poor.

However, the good news is tempered by the fact this potentially lifesaving experimental therapy may not be available to everyone who might benefit. And demand is growing as word spreads. Since CAR T-cell therapy for ALL is available only through clinical trials, do patients have a right to participate? How should we choose among medically suitable candidates?

We have faced these questions before. Most recently, with ZMapp to treat Ebola Virus Disease, azidothymidine (AZT) to treat HIV and AIDS, and Immunitab (Gleevac) to treat Chronic Myleogenous Leukemia. Are patients suffering from devastating, life-threatening diseases entitled to breakthrough therapies?

In a recent paper, we argue that benefit is a continuum, from the complete uncertainty associated with standard research, to an intermediate stage where evidence of benefit mounts and reaches a peak, to a final stage of clearly demonstrated benefit that is sufficient to gain approval for clinical applications.

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

How do medical professionals decide on treatment options for children?

Following widespread media coverage about the court case where baby Charlie Gard’s parents were told that his life support would be removed against their wishes, Dominic Wilkinson appeared on BBC’s Newsnight to discuss the factors that doctors take into account when making such difficult decisions.

Short Video
Full Programme

Source: Practical Ethics, ethics in the news blog by University of Oxford.

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

The ethnographic case: series conclusion by Emily Yates-Doerr

Editors note: This entry concludes the series “The Ethnographic Case” which ran every other Monday between June 2015 and July 2016. The bookCase, which holds 27 cases, can be accessed here.

One day, early on in the series, we received two submissions. Their similar anatomy was striking. Each featured a medical waiting room. Someone entered the space with a gift for the clinical personnel, the gift was accepted, and something shifted in the resulting care.

In Aaron Ansell’s case, set within gardens of an informal clinic in Piauí, Brazil, the gift was a small satchel of milk. Rima Praspaliauskiene’s was set in a Lithuanian public hospital and the gift was a rich chocolate cake. Aaron, who works and teaches on legal orders, analyzed the exchange as a challenge to hospital norms of equalitarianism. He helped us to see how the give-and-take of milk interrupts the requirements of a deracinated liberal democracy, offering instead the warm sociality of personal affinity. Rima, who focuses on medical care and valuing, used the object of the cake to query the social scientist’s impulse to explain why people do what they do. She shows us how this impulse may rest upon the linearity and equivalence of rational calculation, uncomfortably treating sociality as a commodity.

The juxtaposition of these submissions is emblematic – a case, if you will – of something we have seen throughout this series: the art of ethnographic writing resides in a relation between what is there and what is done with it.

Beginnings

We might trace the origin of the series to a business meeting at the AAAs, when we offered the idea of “the ethnographic case” for a Somatosphere series.

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

Projection NOT Promotion: Why the Violence of Sports is Ethical in Society

Image via

STUDENT VOICES

By Maria Trivelpiece

It is quite difficult to get through a day without hearing or seeing some mention of sports or athletics in our world. They practically dominate society. Professional athletes are some of the highest paid people on the planet. They are the epitome of what children aspire to be, fans fawn over and television networks profit from. Yet, in the midst of all the glory of these games, the evident violence that accompanies them seems to be conveniently overlooked. But is it okay to simply ignore that the most watched event on television is a game of grown men tackling each other, beating each other and then celebrating the fact that they physically harmed another human being? Is it ethical to teach our children that the most exciting moment in ice hockey is when the defensemen drop their gloves and fist fight? I am here to say that it is. The violence of sports, in technicality, is ethical because sports are not promoting violence, but rather mimicking and projecting the society that we live in.

We want to rationalize and determine if an action is ethical. Just recently we have seen Colin Kaepernick kneel during the national anthem and cannot imagine why anyone would even condemn him for expressing his freedom of speech. But then, we see the war veteran without legs who so bravely defended our country and does not have the privilege to stand for the flag he fought for and our ‘ethical’ minds question, what is right and what is wrong?

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

Lincoln in the Bardo in the Bardo/ by Russell Teagarden

Russell Teagarden is an Editor of the NYU Literature Arts and Medicine Database and helped lead the Medical Humanities elective at the School of Medicine this past winter. In this blog post, he experiments with creating a text collage from recent reviews of George Saunders novel, Lincoln in the Bardo.

Author’s note:
George Saunders is well known for his inventive and affecting short stories. Lincoln in the Bardo is his first novel, and as described by Charles Baxter in his review in the April 20, 2017 issue of The New York Review of Books, it “doesn’t resemble any of his previous books…nor does it really resemble anyone else’s novel, present or past. In fact, I have never read anything like it.” The story is told by a chorus of spirits or ghosts in a “bardo,” which is a Tibetan limbo of a sort for souls transitioning from death to their next phase. Saunders rarely gives any individual spirit more than 2 or 3 lines of dialog, and he intersperses short snippets from historical textsasome real, some notato provide contextual background. Of particular interest to the medical humanities community will be the focus on the well-trodden subject of grief through this experimental approach. The book has attracted the attention of many serious critics, so many in fact, that they can be assembled into a chorus to derive a review of the book in the book’s format. I have thus taken excerpts from published reviewsamost real, a few notato produce a review that covers how the book is laid out (I), how the bardo works (II), how the story flows (III), and how it’s critically received (IV) as can be told by a chorus of reviewers in a bardo of their own.

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

Rights of aborted foetal remains. Recognised by different countries

Fetal remains  can not be treated as clinical waste

Texas will bury or cremate aborted children. From 19 December 2016, abortion clinics can no longer treat the bodies of the victims (fetal remains) as clinical waste but will have to bury or cremate them, whichever the parents decide. The local reform is part of a new trend to recognise the rights of victims of abortion.

Along the same line of respect for foetal remains, the Austrian government is also permitting parents to inscribe children weighing less than 500 g who die before birth in the country’s Civil Registry. They can also obtain birth and death certificate where the baby’s name appears.

Austria sets a precedent to recognise the right to life of the unborn. In this case, the government, led by the Social Democrats, has obtained sufficient support to go ahead with a reform that allows parents to inscribe children who die before birth weighing less than 500 g in the Civil Registry.

This measure gives parents a birth certificate for their deceased child, as well as a death certificate where the baby’s name appears.

For now, it is the first European country to approve a measure with similar characteristics, but it is a great step towards recognising not only that children who are conceived are human beings, but that they have their own legal entity.

The Austrian Family Minister, Sophie Karmasin, is satisfied with the measure, according to Austrian newspaper Kurier, claiming that it is a measure “that will help parents to overcome the death of their children”.

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.