Tag: gene pool

Bioethics Blogs

Memo To White Nationalists From A Geneticist: Why White Purity Is A Terrible Idea

On
August 14th, UCLA researchers Aaron Panofsky and Joan Donovan presented
findings of their study,  “When Genetics Challenges a Racist’s Identity: Genetic
Ancestry Testing among White Nationalists,”
 at a sociology
conference in Montreal. They’d analyzed 3,070 comments organized into 70
threads publicly posted to the (sometimes difficult to access) “social movement
online community”  Stormfront.

Former
KKK Grand Wizard Don Black launched Stormfront on March 27, 1995. Posts exceed
12 million, ramping up since the 2016 election season. Panofsky and Donovan’s
report has a lot of sociology speak, such as “scholars of whiteness” and
“affiliative self-fashioning,” amid some quite alarming posts – yet also
reveals a sophisticated understanding of genetics from some contributors.

A
WHITE NATIONALIST ONLINE MEET-UP: STORMFRONT

“We are the voice of the new, embattled White minority!”proclaims the
bold, blood-tinged-hued message on the opening page of Stormfront, the “community
of racial realists and idealists.”
 It’s a site for white nationalists,
who are a little less extreme than white supremacists, who want to dominate the
world from their pinnacle of a perceived racial hierarchy. The Stormfronters
seem more concerned with establishing their white purity – defined as “non-Jewish
people of wholly European descent.”

Yet
the lines between white nationalist and supremacist blur, as Stormfront states, “If Blacks or
Mexicans become a majority, then they will not be able to maintain the White
man’s social, cultural and economic systems because they do not have to (sic)
minds needed to do so.”

The
idea of white rights is rather new, catalyzed by the revolts of the truly
marginalized, murdered, abused, ignored, and enslaved.

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

Memo To White Nationalists From A Geneticist: Why White Purity Is A Terrible Idea

On
August 14th, UCLA researchers Aaron Panofsky and Joan Donovan presented
findings of their study,  “When Genetics Challenges a Racist’s Identity: Genetic
Ancestry Testing among White Nationalists,”
 at a sociology
conference in Montreal. They’d analyzed 3,070 comments organized into 70
threads publicly posted to the (sometimes difficult to access) “social movement
online community”  Stormfront.

Former
KKK Grand Wizard Don Black launched Stormfront on March 27, 1995. Posts exceed
12 million, ramping up since the 2016 election season. Panofsky and Donovan’s
report has a lot of sociology speak, such as “scholars of whiteness” and
“affiliative self-fashioning,” amid some quite alarming posts – yet also
reveals a sophisticated understanding of genetics from some contributors.

A
WHITE NATIONALIST ONLINE MEET-UP: STORMFRONT

“We are the voice of the new, embattled White minority!”proclaims the
bold, blood-tinged-hued message on the opening page of Stormfront, the “community
of racial realists and idealists.”
 It’s a site for white nationalists,
who are a little less extreme than white supremacists, who want to dominate the
world from their pinnacle of a perceived racial hierarchy. The Stormfronters
seem more concerned with establishing their white purity – defined as “non-Jewish
people of wholly European descent.”

Yet
the lines between white nationalist and supremacist blur, as Stormfront states, “If Blacks or
Mexicans become a majority, then they will not be able to maintain the White
man’s social, cultural and economic systems because they do not have to (sic)
minds needed to do so.”

The
idea of white rights is rather new, catalyzed by the revolts of the truly
marginalized, murdered, abused, ignored, and enslaved.

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

A CRISPR View of Life

By Shweta Sahu
Image courtesy of Wikimedia Commons

We now live in a society where many are trying to get a leg up where they can, whether it be through pharmacological neuroenhancement (like Ritalin and Adderall) or other neurotechnologies (like transcranial direct current simulation). Technology also allows us to exert an even earlier influence on neurodevelopmental disorders through prenatal genetic testing for fetuses. Such technologies include amniocentesis and chorionic villus sampling, that screen for Down’s, Edwards’ and Patau’s syndromes, and give parents the chance to decide whether they would like to terminate or continue with their pregnancy. One article even claims 53% of all pregnancies were aborted following prenatal diagnoses of Down’s Syndrome, though there is still much dispute over the exact numbers.

More recently, research has turned to looking into how to intervene at even earlier stages with gene editing of embryos. CRISPR (clustered regularly interspaced short palindromic repeats) is a naturally occurring bacterial defense mechanism, that when combined with certain enzymes, like “Cas” (CRISPR associated proteins), enable scientists to manipulate the gene sequence of an organism. CRISPR technology brings to life the idea that we can edit genes by either inserting or cutting out specific DNA sequences. Among the vast, exciting biomedical applications of this CRISPR/ Cas system are some promising leads, such as developing CRISPR based disease models. Diseases like schizophrenia and autism involve many genes and using CRISPR, one lab has been able to recreate the genetic mutations and investigate the “faulty” neurons that play a role in these conditions in animal models more efficiently.

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

5 Reasons Why We Need People with Disabilities in the CRISPR Debates

This article was cross-posted on Disability Remix, the blog of the Paul K. Longmore Institute on Disability at San Francisco State University.

Maybe you haven’t heard of CRISPR-Cas9. To be honest, if I hadn’t previously worked at the Center for Genetics and Society, I probably wouldn’t have heard of it either. It’s a new genetic technology that brings modification of the human germline closer in reach than ever before.

Driven by the promise of allowing parents to avoid passing on incurable genetic diseases to their offspring, the use of CRISPR to engineer human embryos presents serious risks with particularly strong implications for people with disabilities—in the present and future. It’s been getting plenty of press. And yet, as someone who tries to stay up to date constantly with what’s trending in the disability social media scene, it has seemed to me that CRISPR has been more or less absent.

Why aren’t people in the disability community talking more about this?

Why should people with disabilities have to keep spending their time justifying their existence rather than just enjoying it at present?

An event poster for Future Past in 2013 is shown, with purple clouds, and a DNA helix forms the base of a signpost with two directions: future and past.I recall a conference I organized with the Longmore Institute in 2013, “Future Past: Disability, Eugenics, and Strange New Worlds.” Disability studies scholar and activist Marsha Saxton began her panel by sharing a memory of talking with a genetics counselor while contemplating getting pregnant. The counselor exclaimed, “Gee, if I’d have known Spina Bifadas turned out as well as you, I would not have recommended selective abortion as much as I’ve done!”

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 Duplication: New Analysis Shows How Extra Copies Split the Work

The human genome contains more than 20,000 protein-coding genes, which carry the instructions for proteins essential to the structure and function of our cells, tissues and organs. Some of these genes are very similar to each other because, as the genomes of humans and other mammals evolve, glitches in DNA replication sometimes result in extra copies of a gene being made. Those duplicates can be passed along to subsequent generations and, on very rare occasions, usually at a much later point in time, acquire additional modifications that may enable them to serve new biological functions. By starting with a protein shape that has already been fine-tuned for one function, evolution can produce a new function more rapidly than starting from scratch.

Pretty cool! But it leads to a question that’s long perplexed evolutionary biologists: Why don’t duplicate genes vanish from the gene pool almost as soon as they appear? After all, instantly doubling the amount of protein produced in an organism is usually a recipe for disaster—just think what might happen to a human baby born with twice as much insulin or clotting factor as normal. At the very least, duplicate genes should be unnecessary and therefore vulnerable to being degraded into functionless pseudogenes as new mutations arise over time

An NIH-supported team offers a possible answer to this question in a study published in the journal Science. Based on their analysis of duplicate gene pairs in the human and mouse genomes, the researchers suggest that extra genes persist in the genome because of rapid changes in gene activity.

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

Disability as Diversity: A New Biopolitics by Michele Friedner

We’re a medical anthropologist and a literary critic, and while our research interests seemingly have little overlap, we found ourselves engaged in a series of conversations about how the language of diversity shapes representations of disability and reproductive politics, and how this representation stems from the biopolitical management of life in the twenty-first century. In the short essay that follows, we’ll reflect on the ways that diversity discourses have become an organizing concept for some disability and deaf scholars and activists. We’ll show how in conversations about prenatal testing for disability, in political claims made about the value of deafness and disability in international arenas, and in popular media representations of deafness and disability, deafness and disability are often (re)presented as forms of diversity. In particular, we’re interested in the ways that a focus on disability or deafness as diversity works to erase difference, or to present difference as easily surmountable through a rhetoric that erases the actual difficult work of what Wendy Brown has called, “making a world with others.”[1]

Sociologists and critical race and feminist theorists, among others, have long critiqued diversity as a tool in neoliberal political economies that works to promote the status quo through “feel good” politics (see, for example, Ahmed 2012; Brown 1995; Faist 2009; Vertovec 2012); we’d like to extend this critique to look at how appeals to diversity are employed in disability discourses. We believe that this move from disability to diversity functions as a form of biopolitics because it works simultaneously to enable and obscure the means by which the state manages life in an increasingly neoliberal 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

Public Opposes Human Germline

The public is firmly — overwhelmingly — opposed to using gene editing for heritable “enhancement” purposes. Many people, if pressed, will support the concept of heritable “cures” that for the foreseeable future, at least, are not practical and rarely needed, if at all. It is not clear, however, how many of the public (and perhaps the pollsters) have an adequate grasp of the issues involved in heritable human genetic modification (HGM).

CGS has for a decade been collecting polling data going back to 1986: over 50 polls, some of them international, on HGM and/or human cloning are summarized here. Assessing that data, however, has always been tricky.

Polls tend to show that public sentiment about human biotechnologies is strongly ambivalent. Most people value their potential to alleviate suffering, yet are apprehensive about the social consequences of some applications. Public opinion on HGM is particularly difficult to assess because of the ambiguity of some of the questions and the terminology used. Opposition decreases with increased emphasis on cures, and increases with emphasis on non-medical or “enhancement” uses, such as  improving intelligence.

Interpreting the data is now of much more than academic interest. Many scientists and policymakers have begun looking for a “broad societal consensus” to guide decision-making about the limits that should be put in place for human genetic applications.

Prompted by this, Robert Blendon, Mary Gorski and John Benson published a survey article, “The Public and the Gene-Editing Revolution” in the New England Journal of Medicine on April 14th. It analyzes, and links, 17 U.S.

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

The Forgotten Lessons of the American Eugenics Movement

April 28, 2016

(The New Yorker) – The Virginia Colony was one of many facilities for the disabled that were founded in the Progressive Era, partly to provide care for a vulnerable population and partly to remove it from the gene pool, by sequestering those individuals during their fertile years. (On the other side of the coin, Jill Lepore has written about how modern marriage therapy grew out of one man’s effort to promote “fit” unions.) Between 1904 and 1921, the rate of institutionalization for feeblemindedness nearly tripled. Carrie was just one of this crowd, except that she happened to arrive at the Virginia Colony right at the moment when its superintendent, Dr. Albert Priddy, was looking to transform his institution from a genetic quarantine center to a sort of eugenics factory, where the variously unfit could be committed for a short time, sterilized, and then released, like cats, back into the general population, with the happy assurance that they would never reproduce.

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: Hope, Hype, and Caution

It was great scientific research that first noted and then carefully followed the steady and dangerous increase of carbon emissions in the atmosphere. It was no less part of the greatness of the research that it weathered its own uncertainty and the organized attacks by those who did not want to hear the bad news. Yet just as the U.N. climate conference was getting underway in Paris, a less noticed scientific event in Washington had reached a conclusion of comparable impact for our human future.

On December 3 the National Academy of Sciences released a statement issued by the International Summit on Human Gene Editing. That Summit brought together representatives of the U.S. Academy, the Chinese Academy of Sciences, and the Royal Society of the U.K. The incentive for the Summit was the development of a new means of gene editing with a technology called CRISPR-Cas9, and research in China using gene editing on human embryos. In the words of the statement gene editing is a technique for “precisely altering genetic sequencing in living cells, including those of humans,” with greater “accuracy and efficiency than ever before possible.” That possibility is both thrilling and deeply unsettling.

 The organizing committee concluded its meeting with three recommendations. It supported the continuance of basic and preclinical research, examining the potential benefits and underlying biology of editing genetic sequences (often called gene splicing) of living cells, including human cells. It also supported the clinical use of editing somatic cells, that is, those cells that are not passed along to the next generation (useful for cancer research).

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 Human Germline Genome Editing Debate

Charis M Thompson summarizes the recent debate on human germline gene editing and calls for a broader and more inclusive public discussion.

__________________________________________

An International Summit on Human Gene Editing, co-hosted by the US National Academy of Sciences and National Academy of Medicine, the UK’s Royal Society, and the Chinese Academy of Sciences, took place December 1st-3rd, 2015. We speakers were charged with addressing the scientific and ethical challenges posed by the new accurate and accessible genome editing technologies, such as CRISPR/Cas9 applied to human genomes.

The most pressing task of the Summit was to consider whether human germline genome editing should be allowed. Edits to someone’s germline genome are deletions and/or insertions of small segments of DNA in germ cells (eggs and sperm or their precursor cells, pluripotent stem cells, or very early embryos to be used in reproduction). These alterations would be carried into all the cells of a resulting child, and then passed on to future generations through sexual reproduction. Although such edits might cure severe disease in the resultant child, the risk of errors and unintended effects to the child and from spreading genome changes into the gene pool are unknown and, to many, unacceptable. Somatic human gene editing, on the other hand, treats an already existing patient for the disease symptoms she has, raising far fewer concerns.

A range of positions on human germline genome editing emerged over the two and a half days. They fell into “yes” positions, which were in favour of giving the green light to human germline genome editing under the right conditions, and “no” positions, which were against permitting human germline genome editing at this time or ever.

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.