After Bell sterilized Carrie Buck, he was told “a hundred years from now… your descendants may well be proud.”

And other reasons Adam Cohen is wrong about eugenics and gene editing

On February 14, 2017, the National Academy of Sciences (NAS) and National Academy of Medicine (NAM) released a report entitled “Human Genome Editing: Science, Ethics, and Governance.” The report proclaimed that, with caution, limited clinical tests of genome editing should go forward. But human genome editing is controversial. Many international reports and laws support bans or limitations on genome editing.

The report departs from these internationally accepted ethics and laws, wrote the Center for Genetics and Society. (CGS). CGS is a science and bioethics group advocating “responsible uses and effective social governance” of human genetics. CGS put out official comments and a blog post on the report.  CGS also mentions the possibility of eugenics.

On March 17, 2017, Adam Cohen – author of Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck – began an op-ed in the Los Angeles Times with the words:

We entered a new phase as a species when Chinese scientists altered a human embryo to remove a potentially fatal blood disorder — not only from the baby, but all of its descendants…Last month, the scientific establishment weighed in. A National Academy of Sciences and National Academy of Medicine joint committee endorsed embryo editing aimed at genes that cause serious diseases when there is “no reasonable alternative.” …But the committee was also right to support limited embryo editing. This time around, eugenics could be a force for good.

He concludes the op-ed with:

Again, that need not be a bad thing. Twentieth century eugenics has rightly been called a “war on the weak” — its goal was to stop people with conditions like Huntington’s disease from reproducing. Twenty-first century eugenics can enable people with the Huntington’s gene to have children without it. The new eugenics can be a war for the weak.

Cohen’s op-ed, as disability rights journalist David Perry notes, “seems to miss the lessons of the history he synthesizes in his book… Any eugenic gene editing process that is constructed in our culture will reflect the ableist reality in which they are created.”

Further, Cohen misses several other points.

Eugenics was not just state-sanctioned sterilization. Eugenics was not just about preventing “the unfit” from having children. It was, and is, also about immigration, “racial purity,” and eliminating the “mentally defective” population through any means – whether by institutionalizing people judged as such, sterilizing them, preventing their marriage, or in the case of the Nazis, also murdering them.  Eugenicists were not worried about the people with any kinds of hereditary conditions, real or perceived, and far more keen on eliminating the “threat” to the sanctity of American society and economics.

Cohen asks the question if eugenics can be used for good. A colleague told Dr. John H. Bell after Bell sterilized Carrie Buck, “a hundred years from now you will still have a place in this history of which your descendants may well be proud.” Eugenicists believed they had the superior knowledge to know what was best for society, doing public good, based on pseudoscience and their own intensely biased beliefs. They believed future generations would be proud of their work – future generations that contained no “mental defectives,” generations that had been altered by them.

Cohen said “yes” in answer to his question, that the new eugenics can be for people with genetic conditions – that eugenics can be used for good. But he acknowledges that future generations would be permanently altered.

There is no such thing as good eugenics, and Cohen misses that point by a wide mark.

We need to name some modern practices as eugenics – and don’t

How this failure to name eugenics – and then condemn it as such – has resulted in a growing acceptance of renewed efforts to “better humankind”

An article on Germany’s renewed efforts to document Nazi-era medical experimentation and murders of disabled people came out recently without ever mentioning the word eugenics. Published on January 5, 2017, the American Association for the Advancement of Science’s Science Mag titled the piece “Germany to probe Nazi-era medical science.” The phrase “medical science” is too kind for murders rooted in a eugenics movement – and eugenics is not “medical science.”

I am pleased that Germany is doing a probe and that this is getting coverage in a science magazine with such detail, as eugenicists claimed scientific and medical evidence as their rationale. I am less so that they didn’t name eugenics. The article’s word choice got me thinking about eugenics in the past and modern eugenics. If you don’t name eugenics as such, it’s that much harder to recognize today.

Many people I know agree eugenics was a movement that happened in history, and name it in articles and other writing. But I have not seen as many people discussing eugenics practices happening in recent years and today. As a society – with some exceptions – we don’t call many actions eugenics or discuss the perils of eugenics practices occurring in them.

  • We don’t call it eugenics when prenatal testing in order to avoid having disabled children – particularly those with Down Syndrome – happens.
  • We don’t call it eugenics when disabled people receive the recommendation that they should not have a child because they have a disability.
  • We fail to discuss eugenics beliefs behind the removal of children from disabled parents on the basis that they are “unfit to parent” due to disability.
  • We don’t call it eugenics when many states still have sterilization laws on the books and when Buck v. Bell has never been overturned in its entirety.
  • We don’t call it eugenics when disabled people are still sterilized “for their own protection” in many countries, such as Australia. 
  • We don’t call it eugenics when discussions of “designer babies” that are “perfect” – meaning, to many, without any form of disability – occur.
  • We fail to discuss eugenics when talking about human genomics and gene-editing programs, such as CRISPR.

Yet these are rooted in eugenics, with the belief that disability is unacceptable and bad.

Joan Hume, a woman with a disability, wrote in 1995 about the “new eugenics,” prenatal testing, and having disabled children, “The message about disability is loud and clear: the prospect of having a disabled child is not acceptable for many prospective parents…. With the emphasis on “perfect babies” the message of the new technologies is that disabilities can and must be weeded out by eliminating foetuses with certain defective traits. This is clearly a modern version of the earlier eugenics perception that disability is inherently bad.”

And eugenics is, indeed, inextricably linked with the concept that disability is bad – regardless of whether the practices target non-disabled people or not. Eugenics tells people that disability and failure to conform to mainstream society’s expectations and rules are bad. Eugenics is ultimately rooted in  intertwining sets of bigotry: racism, sexism, classism, ableism, and more forms of oppression, using disability, “abnormality,” and “defects” to explain practices such as involuntary sterilization of any marginalized person.

The popular American eugenics movement of the Progressive Era past had eugenicists positing that intelligence and moral “defects” in the “feebleminded” people were passed down like Mendel’s peas generation by generation, using the growing field of genetics, the myth of the “feebleminded menace,”  and “fitter families” contests to make it plausible and acceptable to society. They twisted scientific concepts and used new scientific discoveries and theories of science to make it sound exciting to Progressive-era society – and they also capitalized on public fear and worry about poverty, race, immigration, and disability.

In many ways, it had legitimacy among many – eugenicists testified before Congress on immigration restrictions as “experts” in the years before and during World War II, many states had sterilization laws, and the Supreme Court affirmed a Virginia eugenics sterilization law 8-1 in 1927. In several ways, it did not. Some eugenicists’ careers in eugenics ended early due to the growing negative response from the public. Some prominent scientists decried eugenics as pseudoscience. And eugenicists in that era failed to see their ideas of sterilizing every “feebleminded” person fully implemented on a massive, national scale. 

Unlike the eugenics of the past, eugenics today – from what I’ve seen – is generally cloaked in scientific legitimacy, using real science like CRISPR and gene editing and genomics. Like the eugenics of the past, a lot of people still have fear and other negative, oppressive beliefs regarding poverty, race, immigration, disability, and more. Like the eugenics of the past, is is presented as exciting new scientific discoveries.  And that makes it just as terrifying, if not more.

(ETA: a good resource to follow is Genetics and Society, “a nonprofit information and public affairs organization working to encourage responsible uses and effective societal governance of human genetic and reproductive technologies and other emerging technologies.”)

Carrie Fisher (Princess Leia) Wrote Books and Had a Service Dog

carrie-fisher

[Image description: Three images related to Carrie Fisher. From left to right, Carrie Fisher wearing glasses and kneeling next to her service dog, the French Bulldog Gary, at a red carpet event; Carrie Fisher dressed in white as Princess Leia with her iconic hair buns, surrounded by Stormtroopers; and Carrie Fisher’s book Wishful Drinking, which has her name, the title, and an image of Carrie Fisher with hair buns facedown on a table with a martini glass in her hand.]

In high school, it was mentioned to me in passing by someone that Carrie Fisher, whom I knew as Princess Leia, had bipolar disorder.

I shrugged, and said, “Oh, okay.” She was still Princess Leia.

Sure, depressive episodes and generalized anxiety made up a majority of my days, a damp humid cloak like the Georgia summers I liked to wander down the streets in – alone. An autistic, depressed, anxious wreck, isolated and considered socially unacceptable. But Carrie Fisher was just Princess Leia, right?

I never thought she meant much to me besides her role in Star Wars until a short while ago. In college, I became invested in disability rights and later, after my first and second hospitalizations in a psych ward, mental health rights as well. Each discharge from the hospital read that I had major depressive disorder, not bipolar disorder. Each hospital had only seen me for suicidality. They didn’t see the times I felt higher than the hills I once wanted to die on, and faster than the too-fast DC Metro trains. I find the Metro a relatable metaphor. I too sometimes go too fast, experience frequent malfunctions, and occasionally derail.

But I find her more than a relatable metaphor. Carrie Fisher was a bipolar person who dealt with substance abuse issues. She was often considered socially unacceptable. She openly spoke about her mental health disability, and substance abuse issues (which were in part an attempt to keep her manic episodes in check). She was open about her dog Gary’s role as a service animal and took him to public events. And she was also the actress who played Princess Leia, a mother, an author, and a script doctor who edited scripts.

She was Princess Leia, and she was also an outspoken mental health advocate.

I owe her a lot.

For talking about about everything in the open. For being Princess Leia but also someone who employed a great number of coping strategies for her mental health, and talked about them. For sometimes being considered socially unacceptable.

For showing me that she, Carrie Fisher – Princess Leia – was as outspoken in real life as she was on screen. For showing me that it’s possible to be vocal about personal struggles and what you don’t like – and what is good – about your brain and yourself.