Tag: genetic determinism

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

Good Enough Lives – Procreative Satisficence

By Dominic Wilkinson @Neonatalethics

 

Should parents undertake prenatal testing? Is there a moral reason to prevent disability in your future child through embryo selection?

In a special Moral Philosophy Seminar yesterday evening, Professor Tom Shakespeare, from the University of East Anglia, gave a nuanced and multi-faceted argument against the arguments advanced by Julian Savulescu and Jeff McMahan in favour of embryo selection. In particular he attacked Julian’s Principle of Procreative Beneficence (PB)

Procreative Beneficence (shortened version): when considering different possible children, based on relevant available information, couples should select the child who is expected to have the best life*

Tom rejected some arguments against PB. For example, he was keen to emphasise that he supported parents right to choose not to continue a pregnancy where the fetus would have significant disability. He does not feel that such decisions necessarily express the view that lives with disability are not worth living (the ‘expressivist’ objection against abortion or embryo selection). He also distanced himself from the view that disabilities are a ‘mere difference’, and simply a neutral characteristic – like hair or eye colour.

However, Shakespeare also gave a strong argument against there being a moral duty for parents to select embryos without a genetic marker for disability. He cited evidence that many disabled individuals (including some with severe cognitive impairment) live fulfilling, rich lives and are as happy as non-disabled individuals. He challenged the implicit genetic determinism in embryo selection – there are, he claimed, many other factors that contribute to how well a life goes, including the social setting, and upbringing and as well as the influence of chance events in the child’s future.

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

DNA papers, please

Kuwait is planning to build a complete DNA database of not just citizens but all other residents and temporary visitorsThe motivation is claimed to be antiterrorism (the universal motivation!) and fighting crime. Many are outraged, from local lawyers over a UN human rights committee to the European Society of Human Genetics, and think that it will not be very helpful against terrorism (how does having the DNA of a suicide bomber help after the fact?) Rather, there are reasons to worry about misuse in paternity testing (Kuwait has strict adultery laws),  and in the politics of citizenship (which provides many benefits): it is strictly circumscribed to paternal descendants of the original Kuwaiti settlers, and there is significant discrimination against people with no recognized paternity such as the Bidun minority. Plus, and this might be another strong motivation for many of the scientists protesting against the law, it might put off public willingness to donate their genomes into research databases where they actually do some good. Obviously it might also put visitors off visiting – would, for example, foreign heads of state accept leaving their genome in the hands of another state? Not to mention the discovery of adultery in ruling families – there is a certain gamble in doing this.

Overall, it seems few outside the Kuwaiti government are cheering for the law. When I recently participated in a panel discussion organised by the BSA at the Wellcome Collection about genetic privacy, at the question “Would anybody here accept mandatory genetic collection?” only one or two hands rose in the large audience. When

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

Remembering Ruth Hubbard

Ruth Hubbard — prominent biologist, feminist scholar, multi-faceted social justice advocate, and critic of what she termed “the gene myth” — died on September 1 at the age of 92. Her scholarly and public interest efforts to track and shape the politics of human genetics were an important inspiration to many working on these matters today, including those of us who helped establish the Center for Genetics and Society.

In 1974, Ruth became the first woman to be awarded tenure in the Harvard University biology department. In 1983, she was a founding member of the Council for Responsible Genetics. She also served on the boards of directors of the Indigenous Peoples Council on Biocolonialism and the Massachusetts chapter of the American Civil Liberties Union.

Her books include The Politics of Women’s Biology (1990), Exploding the Gene Myth: How Genetic Information is Produced and Manipulated by Scientists, Physicians, Employers, Insurance Companies, Educators, and Law Enforcers (with Elijah Wald, 1993), and Profitable Promises:  Essays on Women, Science, and Health (2002).

Ruth took on a range of political and social challenges related to the politics of science, genetic determinism, race, and gender. Among these was human germline modification, which she strongly opposed. In 1999, she co-authored Human germline gene modification: a dissent with Stuart Newman and Paul Billings in The Lancet.

In 1993, she wrote in Exploding the Gene Myth:

The cover of the book Exploding the Gene Myth is pictured.

Clearly, the eugenic implications of [human germline modification] are enormous. It brings us into a Brave New World in which scientists, or other self-appointed arbiters of human excellence, would be able to decide which are “bad” genes and when to replace them with “good” ones….We

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 “Outing” of Sperm Donor 9623

Sperm banks continue to expand their search and selection criteria to include clinically ambiguous and frankly irrelevant donor information (favorite pets, astrological sign, hobbies). Yet their failures to verify the self-reported personal and medical histories of donors have recently prompted a set of legal complaints aimed at combating fertility clinic negligence in the unregulated assisted reproduction industry in the U.S.

Several families, including Angela Collins and Beth Hanson from Canada, have recently brought a lawsuit against one Georgia-based clinic, Xytex, and one particular donor. The legal questions are themselves significant, but the case also raises important considerations around disability, class, and genetic determinism.

Xytex, along with its distributor in Ontario, informed Collins and Hanson that Sperm Donor 9623 had an IQ of 160 and was pursuing a PhD in neuroscience, and had no history of physical or mental illness apart from his father’s colorblindness. The clinic did not verify this information, but relied on what Sperm Donor 9623 had reported. The parents, now raising their young son, were understandably shocked upon learning that his donor had in fact spent time in jail and received multiple diagnoses of mental illness.

Parents’ anger, and their concern about their families’ future, should of course be recognized and respected.  But so should the complicated set of issues that this case raises. How do we assess it while resisting genetic determinism, challenging biological explanations for class-based inequalities, and critiquing a purely medical understanding of disability? How do we negotiate the differences between human variation and costly, painful, mental illness?

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

Hacking CRISPR: Patents, Gene Therapy & Embryos

Bruiseless bananas, vegan cats, pig-to-human transplants, and super-muscular dogs: can you tell the real CRISPR projects from fake ones? It’s getting harder these days, as the latest generation of “gene editing” tools are not only (relatively) quicker, cheaper, and easier than any previous genetic engineering method, but have become “probably the fastest-spreading technology in the history of biology.” As it spreads, researchers the world over are discovering new hacks, complexities, and limitations for CRISPR. Here’s a round-up of recent developments in this booming arena.  

Trending globally: gene editing experiments with human embryos

On April 8, news broke that the second paper documenting CRISPR experiments in human embryos had been published. Researchers at Guangzhou Medical University sought to enhance nonviable embryos leftover from IVF with a naturally occurring mutation that confers HIV resistance: CCR5Δ32.


(Image via Wikimedia: Guangzhou Circle)

The experiments were largely unsuccessful: only 4 of 26 embryos wound up with a copy of the desired mutation, and none had the two copies that would be needed to resist the virus. Mosaicism was also a problem. A year prior in April 2015, the first research using CRISPR in tripronuclear human zygotes was reported by a team at Sun Yat-sen University in the obscure journal Protein & Cell, after Nature and Science turned it down. This second paper was reported in “an obscure reproductive journal” published by the American Society of Reproductive Medicine (the same body that releases non-enforceable guidelines into the void of any regulation over assisted reproductive technologies in the United States).

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

Slouching Towards Gattaca

Genetics is the determinism of our age (“Your destiny is determined by your genes”). It appears more scientific than the determinisms of previous ages such as astrology (“Your destiny is in the stars”) or Marxism (“Your destiny is in economics”), and thus has much greater appeal to the people who look to science for The Answers. News headlines breathlessly report the discovery of the “gene for” this behavior or that behavior: the gene for losing your virginity early, the gene for adultery, the gene for lying. What the headlines leave out are the subtleties: yes, our genetics have an influence our behaviors and decisions, but they are not “determinative” in any sense that that word is commonly understood. The same holds true for the genetics of many diseases: genes for things like diabetes and heart disease and high blood pressure and even breast cancer can increase or decrease the likelihood that someone will develop that disease, but are not “determinative.” Many, many factors other than genetics also play a role in developing these diseases.

However, there are some diseases for which the genes do seem to be determinative; that is, if you have certain genes for a condition, you will inevitably develop that condition. Such genetic disorders are called “fully penetrant.” In these cases, destiny does seem to be in the genes . . .

Or maybe not? In a study published earlier this month in Nature Biotechnology, researchers combed through 589,306 genomes obtained from genomic databases such as 23andMe. In so doing, they found thirteen people who have the genes for eight fully-penetrant, usually lethal, childhood-onset disorders; but the adults with those genomes are healthy adults, without the disorders their genes code for.

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 – Catching up by Melanie Boeckmann

Happy New Year to all Somatosphere readers! Hopefully you were able to take a break and came back refreshed and ready to tackle your reading list. Not sure where to start? Start here with the In the Journals December recap. Owing to its length, the round-up is divided into two separate posts. Find the second half here.

American Anthropologist

Sick Healers: Chronic Affliction and the Authority of Experience at an Ethiopian Hospital

Anita Hannig

At fistula hospitals in Ethiopia, patients who are not cured of their incontinence are hired as “nurse aides” to perform essential nursing duties in the ward and operating theater. An array of tensions surrounds the work of these women, tensions that are emblematic of their chronic—but secret—patient status. If accidentally disclosed, the women’s ongoing illness episodes sabotage their ability to administer treatment, such as injections. In contrast to classic anthropological accounts of wounded healers and therapeutic narratives about the virtues of experience-based care, I argue in this article that illness experience can also have a profoundly delegitimizing effect. Rather than attributing these dynamics to the alleged stigma that surrounds obstetric fistula sufferers, I delineate the various challenges to clinical authority that are epitomized by the figure of the sick healer. Nurse aides’ experiences with obstetric fistula proved to be a liability precisely because these experiences had not been resolved. Their chronic injuries raised questions both about their medical training and the efficacy of surgery. Attending to these Ethiopian health practitioners can hone our grasp of the professional dilemmas posed by chronic afflictions and contribute to our understanding of available ideologies at play in the global practice of biomedicine.

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

Stem Cell Researcher to Reddit: “Ask Me Anything” on Human Genetic Modification

Paul Knoepfler is a stem cell and genetics researcher at UC Davis who works with CRISPR on in vitro research in stem cells and cancer. He writes and blogs widely about developing issues in genetics and genomics, and has been particularly prescient about the emerging human genetic modification controversy. Paul will be interviewed by Nathaniel Comfort early next year (stay tuned for the exact date) in our online interview series Talking Biopolitics about his forthcoming book GMO Sapiens: The Life-Changing Science of Designing Babies [Amazon, World Scientific].

Before the International Summit on Human Gene Editing co-organized by the National Academies in D.C. on December 1-3, Paul published an article in Slate titled We Need a Moratorium on Genetically Modifying Humans and gave a TED Talk in Vienna on the pressing concerns raised by CRISPR-Cas9 “gene editing” and its controversial proposed use in human reproduction.

On December 7, Paul engaged with online forum community Reddit’s celebrated feature Ask Me Anything (AMA) and fielded hundreds of pressing questions about the promise and peril of CRISPR-Cas9 “gene editing” embryos and gametes for reproduction. Some of the questions posted by Redditors online related to the current technical capacity of precise genetic engineering: What is currently possible with “gene editing” tools? What genetic conditions could be targeted? How soon until I can have a baby unicorn child? The short answer to all of them, echoed by Broad Institute director Eric Lander at the #GeneEditSummit, is: We are still learning the genetics behind complex traits, and at this point the science has not caught up to our imaginations.

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.