Tag: parents

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 Blogs

Luhrmann and Marrow’s Our Most Troubling Madness by Murphy Halliburton

Our Most Troubling Madness: Case Studies in Schizophrenia Across Cultures

T.M. Luhrmann and Jocelyn Marrow, editors

University of California Press, 2016, 304 pages

 

A key premise of this volume of ethnographic case studies is that schizophrenia, or the various conditions we label as schizophrenia and related psychoses, varies in crucial ways in terms of experience, prognosis and outcome in different sociocultural contexts. Tanya Luhrmann’s introduction to the volume, which features twelve articles presenting twelve individuals diagnosed with schizophrenia (including three cases presented by Luhrmann), casts doubt on the biomedical model of schizophrenia, or at least the strong biomedical model where an individual’s biology is the determining factor in the pathogenesis of schizophrenia. Support for this critique comes from within the fields of psychiatry, psychology and related disciplines, and not just from anthropology, the disciplinary home base of many of the authors in this compilation. This supports the volume’s efforts to speak to an audience beyond the contributors’ own disciplines and “serve as a positive catalyst for change” in how we treat psychosis, especially in European and North American settings (5).

The introduction also briefly traces the history of theories of schizophrenia in psychiatry and anthropology, including moments when the two fields overlapped as with Gregory Bateson’s theory that schizophrenia results from a “double bind” that develops in a person’s psyche from conflicting social cues. This theory, put forth by an anthropologist, had a significant place in psychiatrists’ understanding of pathogenesis until the rise of the medical model deflected the blame from families toward “random bad genetic luck” (16).

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

Can Parents Sue If Their Kid Is Born With the ‘Wrong’ DNA?

It’s a nightmare scenario straight out of a primetime drama: a child-seeking couple visits a fertility clinic to try their luck with in-vitro fertilization, only to wind up accidentally impregnated by the wrong sperm

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

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

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

UK Court Rules NHS Can Stop Charlie Gard’s Treatment over Parents’ Objections

Following a long line of similar British cases, a UK court has ruled in favor of clinical recommendations that Charlie Gard die peacefully.  Charlie’s parents wanted to pursue aggressive directed treatment.


“Although the parents have parental responsibility, overriding control is vested in the court exercising its independent and objective judgment in the child’s best interests.”

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

How Consent Requirements May Shape Teen Mental Health Research

With comments from our Yoram Unguru. Requiring teens to get permission from their parents to participate in studies about behavioral health may make it harder to understand adolescent psychology – especially when drugs and alcohol are involved – a U.S. study suggests

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

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.