Tag: hereditary diseases

Bioethics Blogs

How to make Nazi doctors

Most people who go into medicine have as at least part of their motivation the desire to help other people. I’m sure this was as true in 1930’s Germany as anywhere else. So how did a cadre of Nazi doctors come not only to commit crimes against humanity, but also to defend the moral correctness of their conduct when placed on trial for those crimes? The answer is complex, but one way was through the teaching of medical ethics.

An article in the April 18th Annals of Internal Medicine tells a cautionary tale for teachers and learners of bioethics. Entitled “Lectures on Inhumanity: Teaching Medical Ethics in German Medical Schools Under Nazism,” the article details how the Nazi party developed a curriculum for teaching ethics in medical schools that “was intended to explicitly create a ‘new type of physician’ . . . trained to internalize and then implement the Nazi biomedical vision . . . shifting the focus of ethical concern and medical care away from the individual patient and toward the general welfare of society or the people.” The curriculum included lectures in racial hygiene, the science of heredity, population policy, military medicine, and the history of medicine. Only long-standing members of the Nazi party were appointed lecturers. The lecturer at Berlin University, Rudolf Ramm, wrote the ethics textbook used in the curriculum, which emphasized physician paternalism in practicing their moral obligation to rid society of certain groups, and asserted that every (Aryan) person in Germany had a moral duty to stay healthy.

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

UK Panel Says New Three-Parent IVF Technique Now Safe for ‘Cautious Use’

November 30, 2016

(Reuters) – A three-parent IVF technique designed to reduce the risk of mothers passing hereditary diseases to their babies is safe enough to be offered to patients in special circumstances, a British expert review panel said on Wednesday. Britain’s parliament last year voted to change the law to allow the three-parent in-vitro-fertilisation (IVF) technique known as mitochondrial transfer, which doctors say could help prevent incurable inherited 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

Mitochondrial surprises

According to the endosymbiotic hypothesis, around 1500 million years ago, the mitochrondrion was a bacterium or prokaryotic cell phagocytosed by another to which it provided energy in the form of ATP; the host cell gave it a stable, nutrient medium. Over time, instead of integrating itself in the nucleus, this invader became specialised as an energy centre and reduced its DNA to the current 37 genes. “Why do we still have mitochondrial DNA?” asked Ben Williams of the Whitehead Institute for Biomedical Research in February this year in Cell Systems. “It’s like saying you have a central library with all your books in it, but we’re going to keep 10 of them off-site in a leaky shed”, protected from fire, flood or theft.

Despite this age-old coexistence in all multicellular organisms, the mitochondrion continues to hide mysteries. It is responsible for more than 150 diseases, many of which affect the musculoskeletal and central nervous system, and have no cure. Last year, Great Britain approved so-called mitochondrial replacement — which has still not been given the green light for use in medicine — from which three-parent embryos would result: paternal spermatozoa and maternal nuclear DNA without defective mitochondria, which is transferred to an enucleated donor egg with healthy mitochondria. There has been great bioethical and scientific discussion in recent months about a technique on which few tests have been carried out and which would alter the germ line.

This is something that, in addition, appears simple on paper but is not so straightforward in the laboratory.

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

China to Establish Newborns, Embryos Genome Databases

August 8, 2016

(Xinhuanet) – A genome project for newborn babies was launched in Shanghai on Sunday, to aid the early identification and treatment of hereditary diseases. Jointly initiated by Chinese Board of Genetic Counseling and Children’s Hospital of Fudan University in Shanghai, the project will carry out genetic testing on 100,000 newborn babies over the coming five years.

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/Cas9 for the treatment of haemophilia and other hereditary diseases is being investigated

CRISPR/Cas9 a genetic practise

The use of CRISPR/Cas9 , to which we have often referred in Bioethics News (see HERE), in reference to the fact that it could be used to cure diseases due to an alteration in a single gene, is being investigated to treat haemophilia and other hereditary diseases. An article has now been published (Science (2015) DOI:101126/Science. aad5143) on its use for treating Duchenne muscular dystrophy in mice, which undoubtedly paves the way for its possible use in humans. If so, diseases like haemophilia, Huntington disease and other diseases caused by the alteration of a single gene could be treated by CRISP/Cas9.

La entrada CRISPR/Cas9 for the treatment of haemophilia and other hereditary diseases is being investigated aparece primero en Observatorio de Bioética, UCV.

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

Ethical assessment of mitochondrial replacement to prevent transmission of hereditary diseases

Are there any ethical differences to consider between the two existing mitochondrial replacement techniques? A recent article in Bioethics (Bioethics 29; 631–638, 2015) defends the advisability of using pronuclear transfer (PNT) compared to maternal spindle transfer (MST) to prevent the transmission of certain hereditary mitochondrial diseases.

MST consists of extracting the nuclear DNA from the ovum (egg) of the mother (whose mitochondria are “sick”) and placing it in a healthy enucleated ovum from a donor. Thus, the resulting ovum contains nuclear DNA from the mother and healthy mitochondria from the donor. The ovum is then fertilised in vitro. In contrast, in PNT, the replacement does not occur between ova, but between zygotes. In the first step, two ova are fertilised: one from the mother, containing the “sick” mitochondria, and one from a donor with healthy mitochondria. The DNA replacement occurs between zygotes, resulting in a zygote with the genetic contribution of the parents and the mitochondria of the donor; the other zygote is discarded.

The authors argue that, since MST is applied to the female gamete before fertilisation, it can somehow be said that the sole function of the technique is to allow the mother to have children of her own without the disease. In contrast, since PNT is applied to the zygote, this technique can be considered to act directly on the health of an already existing child, to cure it rather than to satisfy the mother’s desire to have healthy children. From this, the authors draw two conclusions. First of all, that the parents have stronger moral reasons to accept PNT than to accept MST, since not using PNT would directly harm their children, which would not be the case of MST.

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

Gene Editing: A CBC Interview of Margaret Somerville and Julian Savulescu

The following is a transcript of an interview conducted by Jim Brown from Canadian Broad Casting Corporation’s program, The 180, on 3 December between Margaret Somerville and Julian Savulescu

Margaret Somerville is the Founding Director of the Centre for Medicine, Ethics and Law, the Samuel Gale Chair in Law and Professor in the Faculty of Medicine at McGill University, Montreal. She’s also the author of the new book ‘Bird on an Ethics Wire: Battles about Values in the Culture Wars’.

Julian Savulescu is Uehiro Chair in Practical Ethics and Director of the Oxford Uehiro Centre for Practical Ethics at the University of Oxford.

JB: Julian Savulescu, if I could begin with you. You argue that there is a moral imperative for us to pursue gene editing research. Briefly, why do you think it’s so important for us to embrace this technology?

JS: Genetic engineering has been around for about 30 years, widely used in medical research, and also in agriculture, but gene editing is a new version of genetic engineering that is highly accurate, specific, and is able to modify genomes without causing side effects or damage. It’s already been used to create malaria-fighting mosquitoes, drought-resistant wheat, and in other areas of agriculture. But what’s currently being proposed is the genetic modification of human embryos, and this has caused widespread resistance. I think there’s a moral obligation to do this kind of research in the following way. This could be used to create human embryos with very precise genetic modifications, to understand how we develop, why development goes wrong, why genetic disorders occur.

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

Mother to child transmission. A novel prevention technique of hereditary mitochondrial disease

This possible new technique to prevent mitochondrial disease transmission , while it has major advantages, remains nevertheless an intervention on the germ line, and therefore should be carefully evaluated before use in humans, as any changes produced will not only be present in the individual born, but will be transmitted to their offspring.

There is currently no cure for diseases due to alterations in mitochondrial DNA (mtDNA).However, there are a number of techniques, more or less developed, that could prevent mother-to-child transmission of these hereditary diseases; these are known as mitochondrial donation techniques.Among these are pronuclear transfer (PNT) and maternal spindle transfer (MST), recently approved by the British Parliament for use in clinical trials.These techniques mean that children born using them will be genetically linked to three people: their parents (from which the nuclear DNA wouldcome), and a female donor of healthy mtDNA, which raises ethical, medical and safety issues.

Preventing mother to child transmission of hereditary deseases

However, a technique has recently been described that opens a new possibility for preventing mitochondrial disease transmission to offspring (Cell. 2015; 161: p. 459-69), known as mito-TALENs, from the acronym “mitochondria-targeted transcription activator-like effector nucleases”. This consists of the production of artificial restriction enzymes, the action of which is directed to specific points on the mtDNA to remove fragments affected by a mutation.

Mito-TALENshas two major advantages compared to mitochondrial donation techniques.First of all, it avoids the child being genetically related with three parents, preventing the possible psychological problems that this could have for the child (on perceiving a third parent), and the parents (on seeing their parental causal link violated).Secondly,

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

New Poll Finds Only 18% of British Adults in Support of “3-Person IVF”

A newly released ComRes study conducted by the charity CARE has found that only 18% of British adults support “the creation of 3-parent children via genetic modification.”

The poll concerns the currently illegal technique, variously known as “3-person IVF” or more euphemistically as “mitochondrial donation,” which could move into UK fertility clinics shortly following an upcoming Parliamentary vote.

The technique involves the combination of one woman’s nuclear DNA with another woman’s mitochondrial DNA in the creation of a new child, with the hope of avoiding the transmission of mitochondrial disorders from an intending mother. It is currently illegal in the UK and several dozen other countries because it results in the modification of the genetic code passed down through the generations, something also explicitly prohibited in The Council of Europe’s Convention on Human Rights and Biomedicine.

Contrary to the protestations of advocates of the procedure — including the HFEA — total support for changing  the law to allow use of the technique is even less than the number who “strongly oppose” the move (23%), let alone the total opposition (46%). Only 5% “strongly support” the move, while just over a third of respondents answered “don’t know.”

A US FDA committee considered the safety and efficacy of the technique in February and concluded that significantly more animal and embryonic research is needed before human clinical trials should be considered.  When the participants in the latest poll learned that scientists around the world “have expressed concerns about the safety of the procedures for the children conceived” 42% were even less likely to support the change in UK law.

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.