Tag: genetic ancestry

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

Special Issue! Resisting Power, Retooling Justice: Promises of Feminist Postcolonial Technosciences by Anna Zogas

In advance of our regular In the Journals post, I want to highlight a Special Issue. Anne Pollock and Banu Subramaniam have guest edited “Resisting Power, Retooling Justice: Promises of Feminist Postcolonial Technosciences,” in Science, Technology & Human Values. Here are the abstracts!

Resisting Power, Retooling Justice: Promises of Feminist Postcolonial Technosciences
Anne Pollock, Banu Subramaniam

This special issue explores intersections of feminism, postcolonialism, and technoscience. The papers emerged out of a 2014 research seminar on Feminist Postcolonial Science and Technology Studies (STS) at the Institute for Research on Women and Gender, University of Michigan. Through innovative engagement with rich empirical cases and theoretical trends in postcolonial theory, feminist theory, and STS, the papers trace local and global circulations of technoscience. They illuminate ways in which science and technology are imbricated in circuits of state power and global inequality and in social movements resisting the state and neocolonial orders. The collection foregrounds the importance of feminist postcolonial STS to our understandings of technoscience, especially how power matters for epistemology and justice.

Informed Refusal: Toward a Justice-based Bioethics
Ruha Benjamin

“Informed consent” implicitly links the transmission of information to the granting of permission on the part of patients, tissue donors, and research subjects. But what of the corollary, informed refusal? Drawing together insights from three moments of refusal, this article explores the rights and obligations of biological citizenship from the vantage point of biodefectors—those who attempt to resist technoscientific conscription. Taken together, the cases expose the limits of individual autonomy as one of the bedrocks of bioethics and suggest the need for a justice-oriented approach to science, medicine, and technology that reclaims the epistemological and political value of refusal.

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

A New Edition of Science, Technology & Human Values Is Now Available

November 1, 2016

Science, Technology & Human Values (Volume 41, No. 6, 2016) is available online by subscription only.

Articles include:

  • “Informed Refusal: Toward a Justice-based Bioethics” by Ruha Benjamin
  • “A Postapartheid Genome: Genetic Ancestry Testing and Belonging in South Africa” by Laura A. Foster

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

Arguing with Justice: Brexit and Biomedicine by Rosalind Williams

The aftermath of the UK’s recent referendum on European Union (EU) membership, which culminated in a decision for Britain to leave the EU, reminds us of Britain’s bleak history of racism, and should prompt us to reflect upon the political visions of justice that underlie current constitutions of biomedicine.

For many, the outcome of the ‘Brexit’ referendum was justice turned on its head. After the Leave vote won with a 52% majority, social commentators argued that Brexit is an injustice to Britain’s youth—those who will live the longest with the outcome of the referendum wanted to remain in the EU, which bears out in the early retrospective analysis of voter demographics. But the Leave campaign also appealed to justice by arguing that the EU had morphed into a force for “social injustice” as Brussels turned its back on “economic common sense”. The most toxic claims came from those who appealed to a kind of natural right, couched in English nationalism, about who belonged in the UK.

In the wake of these claims on justice, it is, we suggest, time that scholars working at the intersection of science and medicine argue with justice. Similar to other recent arguments about science and justice, we choose these words deliberately. Arguments are often made by using justice (for example, by mobilising the language of “social injustice” to argue against the EU). But scholarship doesn’t as freely spend time arguing with justice—interrogating this unwieldy but thoroughly seductive motif.

At this intersection between Brexit, science and health, it comes clearly into relief that biomedicine is about much more than patients and clinicians, or research participants and investigators.

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

On Cyborgs and Gene Editing: Lessons from Orphan Black

The latest season of Orphan Black takes a cue from Donna Haraway’s “A Cyborg Manifesto” to probe the boundaries of identity, humanity, and perfection, as it reminds us that mainstream genetic and reproductive technologies are closer to the show’s more radical technologies than we might think.

In “A Cyborg Manifesto,” originally published in 1985, Donna Haraway describes a cyborg as “a cybernetic organism, a hybrid of machine and organism, a creature of social reality as well as a creature of fiction.”

The clones of the BBC America television show Orphan Black seem to fit that definition well – they all possess snippets of synthetic DNA entwined in their genome, and often exist in an at least partially fictitious reality designed to better control their actions. However, the latest season explores the possibilities and meanings of cyborg-ness in greater depth. Fittingly, each episode is named with a quote from Haraway’s work: “The Collapse of Nature,” “Transgressive Border Crossing,” “The Stigmata of Progress,” “From Instinct to Rational Control,” “Human Raw Material,” and “The Scandal of Altruism.” And as Orphan Black engages with what it means to be a cyborg, this fourth season also situates itself in the ongoing conversation on new human genetic and reproductive technologies in the real world, including genome editing.

[SPOILER ALERT]

Neolution is the name of the show’s pro-eugenic movement, whose goal is to take control of human evolution. In the first episode of the season, a character reads from the book on Neolution: “The individual can only begin the journey to the extraordinary by casting off the genetically mandated human shell.”

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

Diversions of Biomedical Technologies in a Globalized World — A special issue of Medical Anthropology by Aaron Seaman

The current issue of Medical Anthropology is a special issue, entitled “Diversions of Biomedical Technologies in a Globalized World.” As Claire Beaudevin & Laurent Pordié write in their introduction, “Diversion and Globalization in Biomedical Technologies,” the issue’s seven articles confront a series of questions about the drift, detours, uptake, translation, and off-shoots of biomedical technologies:

How can we analyze the contrast between the original use of a biomedical technology and its new, diverted orientation? Can we ‘measure’ the amplitude of diversions in the light of what local biopolitics consider to be a ‘normal’ use? What is the content of the referential norm, the benchmark: is it made of techniques, morality, experience, explicit regulations? Who decreed it? And thus, who is challenged by the escape from this referential, and why? Is there a difference between diversions that go beyond the scope of biomedicine and those that remain within biomedicine? Are diversions always contesting normative biomedical power and setting up new moral orders? Are they sometimes foreshadowing future legitimate uses?

 

Alignments? X-ray Diversions, Haptics, Credibility—With a ‘Bone-Setting’ Clinic in Hyderabad City

Guy Attewell

In this article, I engage with the diversions of technologies conventionally used for diagnostic scanning among practitioners who perform fracture-reduction and related manual interventions around bodily pain, ostensibly outside the mainstream orthopedic sector, in the city of Hyderabad, south central India. I attend to the performative dimensions of a technology-practice assemblage, and show how enactments of fracture reduction as viable and credible, targeted at establishment orthopedic surgeons, have been enabled through a distributive agency, afforded by scanning technologies.

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

In the Journals December 2015 – Part II by Melanie Boeckmann

Find the first half of December’s post here.

New Genetics and Society

Beyond and within public engagement: a broadened approach to engagement in biobanking

Jose A. Cañada, Aaro Tupasela, Karoliina Snell

Social studies on biobanking have traditionally focused on public engagement, that is, engagement with donors, patients and the general public as an important factor of sustainability. In this article, we claim that, in order to fully understand the way biobanks work, it is necessary to pay attention to a number of other actors, which have an equal, if not greater, impact on their practices and strategies. This means taking a broadened approach to biobank engagement. By using data collected from interviews with different biobank experts based in five different countries (UK, Canada, Finland, Spain and Iceland), we identify seven communities, including the public, that emerge as relevant. Such relationships condition the way biobanks develop, act and plan. The discussion illustrates how the relationships with those seven communities are articulated. We conclude that there is a need for a broadened approach to biobank engagement in order to understand biobank sustainability.

Adoptable packages and the cost of their adoption: the craftwork of making the right cells for regenerative medicine in Japan

Koichi Mikami

The goal of regenerative medicine is to utilize biological properties of cells for therapeutic purposes. Although substantial international investment has been made in this biomedical technology, the issue of which type of cells best serves for these purposes still remains unsettled. Adopting a conceptual framework from Clarke and Fujimura that the rightness of “tools” needs to be socially constructed, this paper examines the interactions of various actors in Japan and demonstrates two kinds of craftwork as examples of attempts to construct the rightness of the cells for the technology.

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

Brain size and socioeconomic status

A new drug, Numarol, is currently being trialled which increases the surface area of the brain in children. Numarol causes children to have bigger brains, do better in cognitive tests and generally improves their life prospects. One critic of Numarol recently pointed out it would be very expensive, and only the rich would be able to afford it. Its release would likely create a significant difference in brain size between the highest and lowest socioeconomic groups. Numarol would create a world in which biological inequalities are forged from economic ones.   The rich would not only have bigger houses, better cars, and better healthcare than the poor, their children would also have bigger brains. Such a world would be abhorrent.

But we already live in this world.  Numarol is fictional, but the rich do have children with bigger brains than the poor.   Social inequalities have already been written into our biology. 

This is the lesson from one of largest studies of brain morphology and structure in children. Brains of children from the lowest income bracket — less than US$25,000 — had up to 6% less surface area than those from children whose parental income was more than US$150,000.   These differences in brain size where then found to be associated with differences in performance in a number of cognitive tests measuring working memory, vocabulary, and reading ability. These associations were independent of age, sex, parental education level and genetic ancestry (which was assessed through a whole genome analysis).

The relationship between family income and brain size was more pronounced among children in the poorest families where “income disparities of a few thousand dollars were associated with major differences in brain structure, particularly in areas associated with language and decision-making skills”.

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

“We’re All One of Troy’s Babies”: A Celebration of Troy Duster

On Friday, August 15th, I was one among a multitude of people finding a seat in Booth Auditorium in Boalt Hall for the event “Celebrating Troy Duster.”  But the event turned out to be less a celebration and more a family reunion, a testament to the work done by organizers Osagie Obasogie and Duana Fullwiley.

For the sake of formalities, there was an agenda, and panels throughout the day pointed to themes that have been central to Troy’s work: the “slippery slopes” of political inclusion and racial science around understanding health disparities; the technique of engaging scientists on race in genetic research; the work of the sociologist in policing, forensics, and behavioral science; and lastly “connecting the dots” between Troy’s work in the academy and his commitment to the public and community engagement. But with each panelist’s approach to the podium, it became increasingly undeniable that every reference to the “Dusterian”—after all, Ruha Benjamin pointed out, we have “Bourdieuian”—analytical method of recontextualizing in context, of noting the pre-frame, was inextricably tied to the love and care infused and cultivated in each of their relationships with the man of the day.

I first met Troy Duster in Rochester, NY in the summer of 2009. I had just finished my sophomore year of college, and was beginning to research the various social ties entangled within the genetic ancestry testing results my dad had sent me eight months earlier. Make no mistake, I found my father’s test results to be a godsend. Although I came to the University of Rochester with the sole purpose of pursuing a molecular genetics major, I quickly found my passion for the double helix in jeopardy during my first semester when I was introduced to anthropology, and specifically the lecture on how race is socially constructed.

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.