Tag: eugenics

Bioethics Blogs

Buck v Bell at 90 years old

Last month marked the 90th anniversary of Buck v Bell. Justice Oliver Wendell Holmes wrote the Supreme Court decision that ruled that Virginia’s sterilization law was constitutional and infamously stated regarding the litigant Carrie Buck, “Three generations of imbeciles are enough.” In his 2016 book Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck (Penguin), Adam Cohen goes over the facts of… // Read More »

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 Ethics of In Vitro Gametogenesis

Françoise Baylis comments on the ethics of using gametes derived from human induced pluripotent stem cells for future human reproduction.

__________________________________________

A recent New York Times article, provocatively titled “Babies from Skin Cells? Prospect is Unsettling to Some Experts,” has once again drawn attention to controversial research by scientists at Kyushu University in Japan who succeeded in making fertile mouse pups using eggs created through in vitro gametogenesis (IVG). This is a reproductive technology that involves creating functional gametes (sperm and eggs) from induced pluripotent stem cells. Induced pluripotent stem cells are cells derived from adult body cells (such as skin cells) that have the ability to become other body cells including reproductive cells (sperm and eggs).

Supporters of this reproductive technology eagerly anticipate similar research in humans. Indeed, enthusiasts are quick to trumpet the potential benefits of in vitro gametogenesis. These benefits fall into three general categories.

First, we are told that research to derive human gametes from induced pluripotent stem cells is important for basic science. It will advance our understanding of gamete formation, human development, and genetic disease. In turn, this increased understanding will create new options for regenerative medicine.

Second, we are told that this research will allow clinicians to improve fertility services. For example, with in vitro fertilization (IVF), women typically have to undergo hormonal stimulation and egg retrieval. This can be onerous in terms of the time required for interviews, counseling, and medical procedures. It can also be harmful. Potential psychological harms include significant stress and its sequelae.

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

From Harry Potter to Jesus – A transfigurative conference report by Laura Perler

 

Credit: Transcultural Studies, University of St. Gallen

Conference report on the anniversary conference: ‘Transfigurationen: Medizin macht Gesellschaft macht Medizin’, 17-18 February 2017, organised by the working group Medical Anthropology Switzerland of the Swiss Anthropological Association (SEG), Wiener Dialoge der Medizinanthropologie (Vienna Dialogues on Medical Anthropology) and the Work Group Medical Anthropology of the German Anthropological Association (GAA).

As medical anthropologists, we expect to learn about diverse places and people, and topics ranging from birth to death. We might not, however, anticipate hearing repeatedly about Harry Potter and Jesus. Both were named by multiple panellists at the tri-national conference on ‘Transfigurations’ in Basel as key figures in their quest to grasp the conference’s topic. Transfigurations?! Is it the kind of magical transformation from rat to tea cup as described in JK Rowling’s novels, or does it reference the pivotal moment when Jesus was transfigured and became radiant in glory upon a mountain? If it be either of these, what is the connection to medical anthropology? Transfigurations?! Is it just an intellectual phantasm of the conference organisers, bored by transformations and figurations, and inspired by the widely used trans– prefix? Transfigurations?! Or is it in the end just another word for assemblages? Read this conference report and you might be inspired by the diverse interpretations and applications of the term, and perhaps even feel yourself transfigured by transfigurations…

 

Panels

The first panel, ‘Therapeutic landscapes: Pharmaceuticals, commodification and epistemologies’, was chaired by Angelika Wolf (Freie Universität Berlin). Stephan Kloos (Austrian Academy of Sciences) began with his talk on the transfigurations of traditional Asiatic medicine.

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

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

UK report on prenatal testing calls for ban on sex disclosure

A new report by the UK’s Nuffield Council on Bioethics, “Non-invasive prenatal testing: ethical issues”, has probably pleased no one by trying to steer a course between banning abortions for sex-selection and allowing abortions for the most common kind of foetal abnormalities.

NIPT is a major breakthrough. It uses a blood sample taken from the pregnant woman and can be done from 9 or 10 weeks of pregnancy. It analyses DNA from the placenta that circulates in the woman’s blood to estimate the chance that the fetus has Down’s, Edwards’ or Patau’s syndromes, as well as single-gene disorders like cystic fibrosis and achondroplasia. It can also determine its sex.

The test is currently available in the UK through private hospitals and clinics, and in some NHS (ie, public) hospitals. Last year, the UK Government announced that from 2018, the NHS will offer NIPT to pregnant women who have been found through initial screening to have at least a 1 in 150 likelihood of having a fetus with Down’s, Patau’s or Edwards’ syndromes.

The report says that NIPT should lead to fewer false results and fewer diagnostic tests, which carry a small risk of miscarriage. In the case of Down syndrome fetuses, 200 more would be identified (with 90% or more being aborted) and 17 fewer miscarriages of healthy foetuses because of invasive tests.

In addition, the Nuffield Council calls for a moratorium on the use of NIPT in sequencing the whole genome of fetuses; it wants a ban on its use in finding out the sex of the fetus because that would lead to sex-selective abortion.

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

Part II: LOVING, Bioethics and How Miscegenation became a ‘thing’

Photo Courtesy of Mill Valley Film Festival

Long Before Jeff Nichols, writer/director, chose to make the film LOVING (2016),  about a heroic couple of modest means striking a blow for the maintenance of humanity—by ending anti-miscegenation laws in the USA—The field of Eugenics had to be born and the term  ‘miscegenation’ coined. Miscegenation laws were present in many states  of the USA into the 1960s, in defiance of the 14th amendment to the United States Constitution and  the Declaration of Human Rights. 
Modern “bioethics” emerged from the documentation of the atrocities associated with both WWI and WWII, and the manipulation of science and technology to serve ‘evil’ rather than beneficence, autonomy and justice. The film Loving speaks to the need to carefully consider the obligations of science. There is no evil science, just bad science and immoral applications. In particular, scientist, and physicians (who are all ultimately researchers) should at least read the Nuremberg Code. The document is a page long with only ten points. 

How did Anti- miscegenation laws come about? Let’s be clear, they were an economic mechanism to oppress slaves and other underclass people and prevent their owning property. This begs the question of how miscegenation became ‘a thing.’

Philosophy and the applied sciences used to be one school—and still were in the 1800s. Philosophy, was not separated from maths, astronomy, medicine and engineering. The footsteps of philosophy still drive scientific method —theory, hypothesis, proof and argument. Francis Galton was born into that time of interface and development of knowledge. Oddly Galton,  a  latter day Renaissance thinker in the  model of Da’Vinci, is attributed with coining the words miscegenation and eugenics.

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

Eugenics and the Outer Limits of Good Breeding

February 13, 2017

(Irish Times) – Eugenics, a science popular in the late 19th and early 20th centuries, aimed to encourage governments to favour the reproduction of the most “fit” members of society and to reduce or even prevent the reproduction of those considered less fit. My students immediately hone in on the injustice of self-selected individuals deciding what constitutes fitness to reproduce. I use the example of eugenics because it shocks them into understanding that science and medicine are not neutral and can be used to forward social agendas.

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

Remembering the ‘Forgotten Victims’ of Nazi ‘Euthanasia’ Murders

January 27, 2017

(Deutsche Welle) – The mass murder of the supposed physically and mentally unfit was a project central to Hitler’s thinking and the ideology of National Socialism. The Nazi leader translated ideas from the international eugenics and Social Darwinist movements of the early 20th century into a homicidal urge to cleanse the corpus of the German people from ailments and weaknesses. This obsession would cost the lives of more than 70,000 people in Germany and many, many more in countries occupied by the Third Reich. But those murders would not have been possible without the active participation of doctors, judges, administrators, scientists and others.

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 to Watch the Biggest Science Story of 2017

Less than three weeks into the new year, gene editing is already set to be one of the biggest stories of 2017.

CRISPR, the latest gene-editing tool, allows scientists to make changes to DNA faster, cheaper, and easier than ever before. There has been an explosion in the number of researchers using this technique over the past two years, and the coming year is sure to see more.

Media coverage of gene editing is also likely to be extensive. And if past experience is a guide, it will include lots of hype and ample confusion. In an effort to provide clarity, here are three key points to watch out for.

1) Germline gene editing and “3-person IVF” are not the same

The first 3-person in vitro fertilization (IVF) (aka “mitochondrial replacement”) birth was reported in September, where a baby with DNA from three people was delivered in Mexico by a New York-based fertility doctor seeking to avoid US regulation. Since then, there has been a tendency in the media to conflate the technique with gene editing.

On New Year’s Day, for example, NPR published a piece on 3-person IVF with the headline “Unexpected Risks Found in Editing Genes to Prevent Inherited Disorders.” After recognizing the error, NPR changed the headline to “Unexpected Risks Found in Replacing DNA to Prevent Inherited Disorders.”

While both germline gene editing and 3-person IVF are technically forms of human germline modification, or the genetic modification of human reproductive cells or embryos, they are completely different procedures.

Gene editing removes, inserts, and/or replaces nuclear DNA sequences in a living organism.

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

CGS Board Member Leads Redress Call for California Survivors of Eugenic Sterilization

Scholars researching California’s twentieth-century legacy of eugenic sterilization, led by University of Michigan professor and Center for Genetics and Society Advisory Board member Alexandra Minna Stern, are urging state legislators to consider reparations for survivors of this abusive chapter in California’s history.

An estimated 20,000 people underwent compulsory sterilization in state institutions from 1909, when California passed its eugenics law, well into the 1950s. According to the study published in the American Journal of Public Health, based on painstaking analysis of historical records, the research team estimates that as many as 831 people sterilized under that law are alive today.

“The remaining survivors of California’s eugenic sterilization program deserve further societal acknowledgement and redress,” the researchers wrote.

And the researchers emphasize that “time is of the essence”: According to their estimates, the average age of the survivors is 87.9 years.

“We suggest that interested stakeholders, including public health advocates, legislators, reproductive justice and disability rights activists, and survivors willing to come forward, move quickly to ensure that California takes steps toward reparations and full accountability for this past institutional and reproductive injustice.”

Their efforts aren’t being ignored. The findings have drawn media attention from high-profile outlets including The Atlantic, the New York Times, NPR Weekend Edition, Scientific American, and the Los Angeles Times. Much of the coverage highlights the call for California officials to make serious efforts to identify the survivors and consider offering them monetary compensation. Such reparations programs have been established with bipartisan support in North Carolina and Virginia, which had similar eugenic sterilization programs.

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.