On a Facebook forum for people with type 1 diabetes (T1D), someone recently asked, “Has anyone in your life told you that you shouldn’t pass on your genes because you have type 1 diabetes?”
The question elicited more than 250 comments and reactions, with many giving an emphatic “no.” However, a small handful of respondents said that they had been told by others not to have kids.
- An adult with T1D said two friends questioned “why I would want to have children if I could pass it along.”
- One person expressed regret that she listened to her doctor and avoided having children: “I wish I did my research, but I was told to listen to the doctor… I never married or had children, believing I would pass on T1D to my child.”
- Two parents said their children hoped that their genes could be altered through new medical technology to head off the risk of passing on T1D to future generations. (This type of gene editing is not currently possible.)
That some people with T1D are being told not to pass on their genes is, perhaps, not surprising.
Such arguments are extensions of ideas that may have taken root during the eugenics movement a century earlier.
Eugenics is a now-discredited, pseudoscientific movement based on the belief that there are certain genes that are “best” to pass on to improve the human race, and that those with so-called “undesirable” genes should be blocked from passing on their genes to future generations.
Shortly after scientists discovered that genetic traits could be hereditary, people began to use dubious arguments about genetics to argue for blocking some members of the population from breeding.
In fact, it was the half-cousin of famed geneticist Charles Darwin who first coined the term “eugenics.”
This concept was experiencing its intellectual heyday in the decades immediately after the advent of insulin therapy in 1922.
Leading eugenicists and early diabetes researchers frequently argued about whether diabetes was a trait to be included among other “undesirable” traits to be blocked.
In the movies we often associate genetic experimentation with mad scientists, but the concept of eugenics actually captured broad support in the United States and Germany in the late 19th century and first half of the 20th century.
Eugenics principles were discussed seriously in articles of Scientific American magazine and at conferences hosted at the American Museum of Natural History.
They were endorsed by luminaries such as Theodore Roosevelt, John D. Rockefeller Jr., and Alexander Graham Bell.
While the formal eugenics movement fell out of favor after the idea became associated with the horrific policies enacted by Nazi Germany, some diabetes advocates worry that the intellectual vestiges of the eugenics movement may still be influencing family planning decision making in diabetes care.
According to Arleen Tuchman, author of “Diabetes: A History of Race & Disease,” eugenics was also rooted in early diabetes care.
The movement attracted people from across the political spectrum, from those who used it as scientific cover for promoting racist policies to those who wanted to reform inhumane living conditions, she said.
“It really spread out between your most rabid racists and anti-immigrants… all the way over through to your social progressives,” Tuchman said.
Before the discovery of insulin, too few people with T1D lived to childbearing age for there to be much discussion about whether the genes of people with T1D should be passed to future generations.
Once insulin therapy began to extend the life of people with T1D, however, the condition began to draw interest of people like Herbert Spencer Jennings, said Tuchman.
Jennings, a zoologist and geneticist, believed that while new medical treatments like insulin reduced people’s pain and suffering, they also increased the chances of passing on what he perceived as “problematic” genetic characteristics for the human race.
He and many other geneticists became convinced that while no one should be denied treatment, they should be denied the right to marry or give birth.
“Jennings was very clear that if we want to be humane, we want to provide these treatments… but you don’t want to allow (those patients) to reproduce,” Tuchman said.
Such thinking wasn’t just academic. Thirty-two states passed laws based on eugenics principles, and it’s estimated that somewhere between 45,000 and 70,000 people were sterilized, as they were considered “unfit to procreate.”
According to Audrey Clare Farley, a D-Mom and historian who has written extensively about the eugenics movement, diabetes, and issues of ableism for many publications, the then-vice president of the American Eugenics Society remarked that insulin was a boon for the individual, but “certainly not a genetic blessing.”
She reports that another physician suggested only giving insulin to people who couldn’t afford it in exchange for sterilization.
In Germany, a diabetes specialist proposed making use of a draconian “marital health law” to deny a marriage license in most cases to people with diabetes, and to terminate pregnancies if signs of diabetes appeared, according to Tuchman.
Early advocates pushed back against this alarming line of thinking. One of the most successful was Dr. Elliot P. Joslin, founder of the legendary Joslin Diabetes Center in Boston.
However, Joslin didn’t push back against eugenics per se.
Instead, he made the argument that people who successfully managed their diabetes well enough to reproduce were more likely to be “good citizens,” and that their benefits to society outweighed their possible “detriments” to the gene pool.
In mounting this argument, Joslin is generally credited with successfully protecting people with diabetes from some of the worst impulses of the eugenics movement when it was at its strength.
However, he framed the argument in a way that presented people with T1D as white, middle class, and civically engaged, said Farley.
Perhaps most damaging, he tied the worth of people with diabetes to their perceived “success” at managing their diabetes, she said.
“The eugenics movement in America yoked ableism to white supremacy, making physical and mental ‘fitness’ a condition of whiteness and good citizenship. This, to me, is the aspect of eugenics that most loudly reverberates in the diabetes community today,” said Farley, whose forthcoming book, “The Unfit Heiress,” chronicles a scandal involving a eugenics law and a forced sterilization of a socialite.
The intellectual push to bring eugenics to the mainstream fizzled out in the aftermath of WWII as the world learned the true extent of Nazi Germany’s atrocities based on a twisted quest for “genetic purity.”
Despite this, eugenics has had an imprint on American life after the war. It has taken decades for eugenics-inspired laws to be stricken from the books, and eugenics still may be affecting the healthcare of hundreds of people.
For example, the Center for Investigative Reporting recently chronicled that some 148 women may have been sterilized without their consent in California correctional facilities from 2006 to 2010 alone.
Advocates also have argued that proposed changes to immigration rules under the Trump administration were inspired by eugenics policies of the past.
Most notably, the proposed “public charge” rule attempted to bar lawful immigration for people who may be perceived to be at risk of being on public health programs like Medicaid.
Advocates have argued that this would make it much more difficult for people with chronic conditions to successfully emigrate to the United States. That proposed change has been blocked in court.
In many ways, it can be hard to determine where eugenics ends and where ideas often associated with eugenics — racism, classism, and ableism — begin.
When discussing social policies in the late 20th century and early 21st century, Tuchman is careful not to say they are directly related to eugenics, because she feels it isn’t always clear.
“I would without any hesitation say that it’s about racism, and xenophobia, and to some extent classism. I’m just reluctant to call it eugenics,” she said. “But there are people who know just as much about the history of eugenics who are not as reluctant as I am.”
Farley, however, believes that one can draw strong lines from eugenics thought to at least some aspects of modern diabetes care.
For example, she wrote how eugenics arguments set back maternity care for women with insulin-dependent diabetes.
Even Joslin was arguing against pregnancy with diabetes by using a dramatic example of a difficult pregnancy that took place before insulin therapy was available.
Only one doctor, Dr. Priscilla White, prominently pushed back against advice essentially banning women with diabetes to be pregnant; she believed these ideas were grounded in eugenics thought instead of fact.
In 1949, White published a guide for physicians on pregnancy and diabetes. When used by the medical community, her advice dramatically improved outcomes for pregnant women with T1D and their infants.
Farley also has argued in The Atlantic that both the play and movie “Steel Magnolias” have eugenics overtones.
One plot line in this popular 1989 film — spoiler alert — follows a young woman with T1D who goes against her doctor’s advice to conceive a child, but who then dies a few months later from the strain on her body.
Farley writes that the plot line “normalizes the dire outcomes for women who assert their rights in medical settings by restoring order after Shelby’s death.”
Farley insists that if maternal diabetes care hadn’t been held back by eugenics, the outcome likely would have been better for the young mother.
“After I wrote that piece, I heard from a lot of low-income women who said that they had been scolded by their doctors for getting pregnant,” Farley said. “So, I believe it’s one long class line of whether a diabetic woman is discouraged from having children.”
She said the struggle against substandard maternal care is still ongoing, especially for people who aren’t affluent.
For better or worse, “Steel Magnolias” has become an important piece of pop culture for people with T1D.
It may be difficult to quantify its impact on generations of women with T1D about their decision whether or not to have children.
In 2012, there was a remake of the movie, this time with an all-Black cast in the lead roles.
Despite the fact that between 1989 and 2012 there have been vast improvements in options for insulin therapy, blood sugar management technology, and maternity care for people with diabetes, the outcome for the main character with T1D, Shelby, did not change.
In the 2012 adaptation, she’s depicted as going against medical advice in conceiving a child — and still dies in the end.
For all their focus on human genes, it turns out eugenicists a century ago had only a rudimentary understanding of how genetics actually works.
The fact that they couldn’t quantify the risks of passing on genes may explain why so often their impulse was to want to ban whole swaths of possible pregnancies.
Today, scientists are still trying to understand how and why T1D develops in some people and not others.
According to the American Diabetes Association, a father with T1D has around a 6 percent chance of passing T1D to his child, while a mother with T1D has around a 1 to 4 percent chance. If both parents have T1D, the odds go up to 25 percent.
It turns out that even if you pass on the gene for T1D, it takes a variety of still-not-yet-understood factors for that gene to “switch on” in some people.
The ongoing TrialNet study has been gathering data on family connections for years. And recently, the national advocacy nonprofit JDRF launched a first-of-its-kind home testing kit to help parents determine whether their kids might have the genes that put them at risk of T1D.
Researchers are hopeful study efforts like this might help unlock more information about how T1D develops in some people with the genes for the condition and not in others.
The bottom line is that people with T1D must make their own individual decision, in consultation with their healthcare team, about whether to conceive.
There’s no real way of knowing whether your child will develop T1D, but we do know that a healthy, happy, productive life is possible with this condition.
We also know that for T1D women, a healthy pregnancy is quite possible, and many of the traditional myths — like the idea that a cesarean section is unavoidable — have been debunked.
See our DiabetesMine guide to 9 Things to Know About Pregnancy with Type 1 Diabetes. You can also refer to this extensive guide from JDRF on planning a pregnancy with T1D.