"I had seen enough of savage races to give me material to think about all the rest of my life...The propagation of children by the Unfit is looked upon... as a crime to the State."
"The world no longer needs all the individuals we are capable of bringing into it-especially those who are unable to compete and are an unhappy burden to others. If the size of our families must be limited, surely we are entitled to children who are healthy rather than defective."
"The information from the human genome project makes it a moral imperative to produce children with the best genes possible."
Can you guess which person -- Hitler, Francis Galton, Julian Savulescu, Joseph Fletcher -- said which quote?
I recently read an article by Tasha Kheiriddin about her daughter Zara and autism. It reminded me why I am so opposed to unfettered abortion and assisted-suicide/euthanasia.
I worry about the weakest amongst us because there's merely a thin veneer of civility covering the barbarian within. Caring for people, young and old, with extra needs -- physical, mental, intellectual -- is exhausting, financially and emotionally. Then add to that the strain it puts on to our health care system and there's great potential for abuse especially from burn-out. Think Amour.
There are gaps in our health care system. We have to prioritize our values in order to allocate finite funds.
Will we as a society continue to care for the weakest as we do the strongest? Will we continue to accord the weakest the same rights and dignity that we do the strongest? Will we think of "imperfect" children and the elderly through the lens of quality-of-life ethics and decide that they are burdens so we will help them out of this life?
We could have a new slogan: "Life with dignity or no life at all."
I opened this blog with quotes and asked who said them. Here are the answers.
In 1851 Francis Galton, half-cousin of Charles Darwin, went to South-West Africa to observe the population. It was at this time that he began to develop a new view on human heredity. He developed "eugenics": the idea that selective breeding would improve the genetic pool.
Galton's life experiences led him to write that he "had seen enough of savage races to give me material to think about all the rest of my life." And later in life, he wrote a novel, Kantsaywhere, which imagines a eugenicist in utopia. Here having children was not a right. Reproduction was contingent upon passing certain tests. "The propagation of children by the Unfit is looked upon... as a crime to the State."
Joseph Fletcher (1905-1991) an Episcopal priest who taught Christian ethics at the Episcopal Divinity School in Cambridge Massachusetts and Harvard Divinity School said: "The world no longer needs all the individuals we are capable of bringing into it-especially those who are unable to compete and are an unhappy burden to others. If the size of our families must be limited, surely we are entitled to children who are healthy rather than defective."
He also wrote that families with genetic abnormalities have a "responsibility for quality in their offspring and of obligation to the community's interest," not to pass down that genetic error.
Julian Savulescu, a neuroethicist at the University of Oxford, evangelizes good eugenics. Parents and health care providers will have a moral obligation to create children with the best genes possible.
Today, science is making it possible to remove "genetic errors" by changing the DNA in the ovum.
I am left asking what constitutes a genetic error. Missing a limb? Cleft palate? Down syndrome? Autism? And who will be the arbiter of these decisions as we learn more about our genes and heredity? Do YOU want to be God?
In the Biblical story of Job, Job finally questions God. God questions the question by asking Job, were you here at the beginning of time? Will you be here at the end? In other words, there are some things we don't understand; things we can't put into perspective because we can't see the whole story.
We are part of a process of evolution, between the beginning and the end of time.We are learning more about ourselves, how we have evolved. What if we are seeing an evolution in our species right before our eyes? What if children on the autism spectrum are the beginning of a more evolved us? From Temple Grandin to Mark Zuckerburg?
Many decades ago, there was a television programme, The Twilight Zone, by Rod Serling. On this particular episode, we're brought into an operating room where we see the back of the heads of the staff bent over the surgical table. We hear the voice of a female patient begging the doctors to do whatever they can to fix her. We listen to the dialogue amongst the medical staff as they try to repair her. We hear their sense of frustration. We watch as the nurses blot the sweat off the surgeon's brow. The doctors sadly inform the patient that the procedure is a failure. She begs them to try again. But, they tell her there is nothing more that can be done. She's defective. She will have to go to the special towns, cities of refuge, set aside for the defectives. We hear her crying and begging as the credits roll over the screen and we finally see the woman.
She'd be described today as a supermodel with beautifully chiseled features. Big wide eyes. Long wavy hair. And we wonder, what is so wrong with her that she needs to be hidden away? She appears to be the definition of beautiful.
Then we see the surgeons and the nurses in the operating room as they remove their masks and commiserate about the poor woman. And then we understand. They all look alike. They each have a very pink face; the face of a pig, the epitome of perfection.
The point is who decides who is perfect, normal, and genetically acceptable? And when? In utero, at birth, later in life when an "imperfection" shows up? Perhaps in later years when one becomes a burden to family or society?
Quality-of-life and utilitarian ethics (greatest good for the greatest number) could make for dangerous bedfellows.
In January, the <a href="http://www.huffingtonpost.com/2012/01/04/chances-of-having-twins_n_1183674.html">Centers for Disease Control and Prevention</a> reported that the numbers of twins in the U.S. has jumped in the last three decades: In 2009, 1 in every 30 babies born in the U.S. was a twin, compared to just 1 in every 53 in 1980. Why? Chalk it up to more and more couples using assisted reproductive technology, as well as an increase in women waiting to have kids until their 30s when the odds of having twins increases,<a href="http://www.huffingtonpost.com/2012/01/04/chances-of-having-twins_n_1183674.html"> AP said.</a>
In March, the Centers for Disease Control and Prevention released new figures on autism spectrum disorder in the U.S. and they were up: <a href="http://www.huffingtonpost.com/2012/03/30/autism-rate-increase-repo_n_1390721.html">1 in 88 children</a> is now believed to have autism, compared to the previous estimate of 1 in 110. Experts attribute much of the increase to better screening and diagnosis, AP reported, but that does not mean the findings aren't cause for concern. "Autism is now officially becoming an epidemic in the United States," Mark Roithmayr, president of Autism Speaks, said at a news conference.
A <a href="http://www.huffingtonpost.com/2012/07/19/alcohol-during-pregnancy-_n_1686953.html">Centers for Disease Control and Prevention</a> survey from July found that 1 in 13 pregnant women in the U.S. drink alcohol. And of those who said they drank, 1 in 5 admitted to going on at least one binge -- having four or more drinks at once. <a href="http://www.huffingtonpost.com/2012/08/22/drinking-alcohol-pregnant-effects-children_n_1822880.html">A study</a> that came out a month later found that drinking during pregnancy has long-lasting effects on children's size.
More and more kids are swallowing batteries, a Centers for Disease Control and Prevention report found, sending thousands of children to the ER each year. Between 1997 and 2010, nearly 30,000 kids up to age 4 were taken to the emergency room for battery related injuries, <a href="http://www.huffingtonpost.com/2012/08/30/swallowed-batteries-kids_n_1844412.html">MyHealthNewsDaily reported</a> in August. More than half of the cases involved small, circular button batteries.
In August, the <a href="http://www.huffingtonpost.com/2012/08/27/new-circumcision-guidelin_n_1826069.html">American Academy of Pediatrics</a> -- the U.S.' major pediatrics organization -- revised its policy on infant male circumcision, saying that the health benefits outweigh the risks. But the new guideline stopped short of recommending it routinely, stating instead that it should simply be available to parents who choose it for their sons. To the great surprise of no one, the policy was an immediate source of debate, with one "intactivist" leader <a href="http://www.huffingtonpost.com/2012/08/27/new-circumcision-guidelin_n_1826069.html">telling HuffPost</a> that the AAP had failed to address what she called the "real risks and harms of circumcision."
Also in August, the <a href="http://www.huffingtonpost.com/2012/08/02/breastfeeding-rates-cdc_n_1734381.html">Centers for Disease Control and Prevention</a> announced that more moms in the U.S. are breastfeeding their babies. Some 47 percent of moms breastfed their babies for at least six months in 2009 (the latest year for which there is data). That's up from 44 percent the year before. "The headlines 10 years back were, 'Mothers don't breastfeed enough; Is something wrong with mothers?'"Dr. Alison Stuebe, an OB-GYN and assistant professor of maternal and child health at the University of North Carolina <a href="http://www.huffingtonpost.com/2012/08/02/breastfeeding-rates-cdc_n_1734381.html">told HuffPost</a>. "We've recognized that this is crazy. Let's fix the system rather than going after moms.'"
The number of kids and teens being prescribed antipsychotics has soared, an August study in the <a href="http://www.huffingtonpost.com/2012/08/09/antipsychotics-adhd-study_n_1760602.html">Archives of General Psychiatry</a> found. Psychiatrists now prescribe the drugs in one out of every three office visits with children, and increasingly for off label use -- namely, the treatment of ADHD. The latter in particular, experts <a href="http://www.huffingtonpost.com/2012/08/09/antipsychotics-adhd-study_n_1760602.html">told HuffPost</a>, is cause for serious concern: "Although antipsychotic medications can deliver rapid improvement in children with severe conduct problems and aggressive behaviors, it is not clear whether they are helpful for the larger group of children with ADHD," study author Dr. Mark Olfson, a professor of clinical psychiatry at the College of Physicians and Surgeons of Columbia University, said.
Nitrous oxide, otherwise known as laughing gas, is a good way for women to manage some of the pain that accompanies labor, a <a href="http://www.huffingtonpost.com/2012/09/13/laughing-gas-delivery_n_1881496.html">Cochrane review</a> from September said. Though it's not at all popular here in the U.S. -- only 1 percent of women use laughing gas during birth, compared to the 60 percent of women who have an epidural during vaginal delivery -- the review concluded that it is both effective and safe for mom and baby.
Though sleep training can be a source of contention among parents and parenting experts alike, <a href="http://www.huffingtonpost.com/2012/09/10/infant-sleep-training_n_1865767.html">an Australian study</a> published in September concluded that two of the most popular methods are perfectly safe. "Controlled comforting" (basically a modified form of cry-it-out) and "camping out" (when parents sit in the room with their babies and pat or comfort them, but do not feed or cuddle them to sleep), did not have any impact -- good or bad -- on children when researchers looked at them at age 6.
They're still rare, but severe complications from birth are on the rise in the U.S., <a href="http://www.huffingtonpost.com/2012/10/24/us-birth-complications_n_2008771.html">Reuters reported</a> back in October. A Centers for Disease Control and Prevention study found that between 1998 and 2009, the rate of major complications, including things like severe bleeding and kidney failure, essentially doubled. Though <a href="http://www.huffingtonpost.com/2012/10/24/us-birth-complications_n_2008771.html">experts stressed</a> that most women who give birth are perfectly fine, there has been an increase in women giving birth at older ages, as well as women who are obese or have certain health conditions that up their risk, such as high blood pressure.
Research published in October in the journal <a href="http://www.huffingtonpost.com/2012/10/20/boys-puberty_n_1987979.html">Pediatrics</a> showed that boys in the U.S. are entering into puberty at ever earlier ages: On average, boys are starting puberty six months to two years sooner than previous data showed. The study, which is among the first to look at the issue of early-onset puberty in boys, found that white and Hispanic boys now start to show signs of puberty when they are 10, while African American boys may start to show signs when they are 9 years old. What exactly this means isn't yet clear, <a href="http://www.huffingtonpost.com/2012/10/20/boys-puberty_n_1987979.html">study researchers said</a>, but it flags an issue that warrants further investigation.
A lot of parents limit the amount of TV their kids watch each day, but <a href="http://www.huffingtonpost.com/2012/10/01/children-tv-exposure-study_n_1923719.html">research published in October</a> found that many are nonetheless exposed to a lot of it -- in the background. The study, which ran in the journal <a href="http://www.huffingtonpost.com/2012/10/01/children-tv-exposure-study_n_1923719.html">Pediatrics,</a> found that kids are generally exposed to at least 4 hours of background TV per day (meaning it's on in the same room they're in, even if they're not watching directly) and children under the age of 2 are exposed to 5.5 hours every day.
A November study in the journal <a href="http://www.huffingtonpost.com/2012/11/08/antidepressants-pregnancy_n_2094155.html">Human Reproduction</a> caused quite a stir when it suggested that SSRIs, a type of antidepressants, may increase the risk of complications when taken during pregnancy. Problems include risk of miscarriage, birth defects, neurobehavioral problems and more, the study researchers said. But there was significant push back from many mental health experts who rushed to write letters to the editor saying that the study ignored the many risks of untreated depression.
In November, the <a href="http://www.huffingtonpost.com/2012/11/13/us-preterm-birth-rate-hit_n_2118244.html">March of Dimes</a> released its annual preemie birth rate report card and, overall, the news was good: The U.S. preterm birth rate was the lowest it has been in a decade, dropping to 11.7 percent. While that is certainly welcome news, the U.S. still has a long way to go, March of Dimes experts <a href="http://www.huffingtonpost.com/2012/11/13/us-preterm-birth-rate-hit_n_2118244.html">told HuffPost.</a> Overall, the country still only earned a "C" and only four states (Vermont, Oregon, New Hampshire and Maine) earned an "A."
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