Eugenic immigration policies revisited

Many people, when they think of the history of eugenics, think of Nazi Germany. However, eugenics was widely accepted and implemented as policy in America long before the Nazis rose to power.

At the beginning of the 20th century, the numbers of immigrants to the United States were increasing rapidly. This greatly alarmed those who were aligned with the eugenics movement, the quasi-scientific movement to preserve “racial purity.” In 1920, Harry Laughlin, superintendent of the Eugenics Record Office, testified before the House of Representatives Committee on Immigration and Naturalization that the “American” gene pool was being polluted by certain immigrants who were portrayed as social inadequates, intellectually and morally deficient — understood as those from southern and Eastern Europe. Laughlin was subsequently appointed the committee’s “Expert Eugenics Agent.” The committee crafted the Immigration Act of 1924, which was designed to limit the immigration of “dysgenic” peoples: Italians, Slavs, Eastern European Jews, and Africans; Arabs and Asians were banned outright. The quotas were set to favor those from the racially superior Northern European countries. According to the State Department Office of the Historian, “In all of its parts, the most basic purpose of the 1924 Immigration Act was to preserve the ideal of U.S. homogeneity.” The House of Representatives History, Art, and Archives website describes the act as “a legislative expression of … xenophobia.” President Coolidge commented as he signed the act, “America must remain American.”

With the specter of a new, Gattaca-like eugenics staring us in the face, it had seemed like the worst abuses of the old eugenics — forced sterilization and the like — were history. It is painful — but plain — to see, if recent reports prove true, that the elitist, racist mentality behind the eugenics movement still holds sway at the highest levels of our government.

From Coercion to Christmas

The recent wave of stories of sexual abuse and harassment led my residents (I teach family medicine residents) and me to a discussion of sexual ethical violations in medicine. The annals of disciplinary actions by state medical boards are filled with penalties inflicted upon physicians who have entered into sexual relationships with patients.

Why is it that in the patient-physician relationship, sexual intimacy between two (often) consenting adults is proscribed, and has been since Hippocrates prohibited it in his oath? Why, even in our sexually permissive age in which anything goes, is this still taboo?

The issue with physicians and patients — as with most of the accusations making headlines recently — is power. The patient-physician relationship is radically asymmetric with regards to power. The patient is vulnerable; the physician is not. The patient reveals dark secrets, and uncovers his or her body for examination; the physician does not. One person in the room is exposed, figuratively, and literally, and it ain’t the doctor.

It is this asymmetry, this difference in power, that makes it so difficult for an intimate relationship to be truly consenting; there is a very real danger that the less-powerful party will act from some sense of coercion, even if the coercion is unrecognized and unacknowledged. When a relationship as intimate and personal as a sexual relationship is coerced, even subtly, the potential for harm to the weaker partner is so great that the ancients, in their wisdom, forbade it, and we moderns have seen fit to respect that prohibition.

Of course it is not just patient-physician relationships that are asymmetric and thus liable to abuse. Whenever one person exploits their position of superior power over another the potential for abuse exists, such as when a person with great political power personally attacks those in positions of less power on social media. We call such abuse of power “bullying.” We rightly condemn such abuses.

This got me to thinking about the most asymmetric relationship possible: the relationship between God and people, the Creator and the created. While there is no sense in which God could be said to abuse his power, he seems remarkably restrained in his exercise thereof. We read of times when he shows up in dazzling displays — think of the children of Israel leaving Egypt, or God speaking to Job out of the whirlwind — but more often than not he is veiled: a still small voice, a dream, a soft but persistent voice in the night that keeps calling our name.

And when God gives us the clearest revelation of who he is, he eschews any semblance of powerful exhibition, and comes as a baby. When he grow up and displays his power, it is veiled in love: he heals, he saves a wedding celebration from disgrace, but often with admonition, “Don’t tell anyone.” Even his greatest display of power — his Resurrection — was carried out in such a way that many of those nearest to him had a hard time understanding or believing it.

God is powerful, no doubt. But he rarely uses his power to overwhelm or coerce us. He seems to prefer self-giving love as his means of persuasion. We are told that someday he will come in a full demonstration of his power and glory. But for now, as we celebrate at Christmas, he comes to us as a baby. He comes to be with us, as one of us, so that he can lead us from where we are to God. Or, as an old Christian named Athanasius said, “He became as we are, that he might make us what he is.”

I’m on call for our obstetrical service this holiday. I’m going to try to let each baby I see be a reminder of how God deals with us: power that clothes itself in self-giving love.

Racial inequalities in cancer survival

Three studies published in a supplemental issue of the journal Cancer this month come to disturbing conclusions: in the United States, the survival rates for colon, breast, and ovarian cancer are lower for black people than for white people.

The news isn’t all bad: overall cancer survival rates are going up. The three studies mentioned here draw from two larger studies of worldwide cancer survival, the CONCORD study, published in 2008, and the CONCORD-2 study, published in 2015. Between CONCORD and CONCORD-2, cancer survival increased across all groups. But in both studies, the survival of black people in the United States lagged behind that for white people by about 10%.

Now there are certainly many reasons for the difference. Black people may be getting diagnosed with cancer at later stages, when survival is lower. There may be differences between the two groups, like genetic factors or the presence of other illnesses, that cause the cancers to be more aggressive in blacks. Mistrust of the health care system is more common among black patients, so they may be less likely to access care or access it early enough.

But other reasons include socio-economic status and access to health care; those who can’t access medical care because they can’t afford it or because it is not available nearby are less likely to receive necessary screening and treatment. And most troubling is the “consistent finding that black women do not receive guidelines-based treatment compared with white women, even when treated within the same hospital.”

The situation is too complex for simplistic answers; one can’t say from these studies that doctors are individually practicing blatant racism, and there is after all such a thing as systemic racism. But the medical profession should take such findings seriously, and seek every available avenue of education and self-monitoring to ensure that of all the places people encounter racism, the health care system is not one of them. And Christians especially, who believe that God created all people with equal dignity because all of us are created in His image, should work towards a health care system where the value — or length — of one’s life does not vary based solely on the color of one’s skin.

The unbefriended and their doctors

There is a rapidly growing class of uniquely vulnerable patients showing up on our hospital doorsteps. Referred to as the unbefriended, or more prosaically as the unrepresented, these are patients who have no capacity to make medical decisions themselves, have no advance directives, and have no family or friends or anybody else on the face of the earth to speak for them. It is as if they dropped out of the sky, and we cannot find anyone with enough of a human connection to them to help us know what they think or desire.

There is great tragedy in reaching a point in life where there is seemingly nobody who knows you or cares about you. The tragedy is often felt keenly by those who provide medical care to such patients. If a patient cannot make decisions for themselves, and if they have no advance directive, and if there is nobody who knows them to make surrogate judgments regarding their care, we default to the “best interest” standard for making decisions: What course of action is in the best interest of this patient? Which leads to the next question, Who decides what is in the patient’s best interest? One can defer to the courts and pursue legal guardianship. However, in my state at least, such a process is neither timely nor inexpensive, and the chances are slim that a public guardian with an already impossible caseload will take the time to get to know the particulars of a patient’s condition in order to make a reasoned decision.

If not a legal guardian, then it is the care team that must decide: in particular, the burden falls to the attending physician. In any situation, it can be difficult to do things to patients without their explicit consent. In situations where withdrawing life-sustaining treatment is on the table, it becomes especially difficult. Even in cases where it is clear that withdrawing life-sustaining treatment is in the patient’s best interest — when the burdens of treatments far outweigh any potential benefit, when the treatments don’t actually treat anything — a thoughtful, well-meaning physician might torture herself with doubts: Are we doing this because the patient is seen as a burden to the system? Are we taking a step down a slippery slope?

Nobody should feel as though they have to make such a decision alone. Other care team members can contribute to the decision-making process, of course. Ethics committees can help to support the physician on an ad hoc basis. But the scope of this problem will only grow as the population ages. In order to protect these extremely vulnerable patients, resources should be made available to provide easily-accessible, compassionate, wise third-party decision-makers who will protect both patient and physician. In a few places accommodations have been made on an individual hospital or county-wide basis. However it is done, action should be taken to ensure that these, perhaps some of the most vulnerable patients outside of the womb, are treated within the medical milieu as people with worth and dignity, and that those taking care of them are not carrying momentous decision-making burdens alone.

Reflections on visiting the site of a concentration camp

My 18-year old daughter has gone to spend a year in Germany as an exchange student. She is part of a group of students spending a month in intensive language training before going to live with their host families. This week, the students visited the site of the Mittelbau-Dora concentration camp. My daughter describes the camp and her experience in detail on her blog; below is a portion of her post that deals particularly with questions of remembrance and human dignity.

Thus arise the questions that no one can answer. How did an entire nation blind itself, how did so many people allow themselves to be ignorant, how did people permit so much of their humanity to leave them that they would stay silent in light of such awful atrocities? It’s impossible to say that the German people did not know what the concentration camp system was, because it engulfed all of Germany–in a way, the entire nation was a single, enormous concentration camp. And why silence reigned supreme is a question and a lesson for eternity.

Today, however, there are different questions.

How can and should citizens of the twenty-first century remember Mittelbau-Dora and the rest of the concentration camp system? Throughout the twentieth century, survivors led the remembrance ceremonies and established Holocaust education memorials as official cultural institutions. But these survivors are passing away, and with them their stories and drive to remember the past (the youngest living survivor of Mittelbau-Dora is 88). Holocaust historians have this dilemma, because no one knows how to remember the past, or how to teach it to others to prevent it from repeating itself, without the tangible lessons and stories from those who saw it.

But, although the people are passing away, the places are not. One essential way to remember and respect the Holocaust is to revere where it happened. This is why Holocaust memorials are so important (and why a group of 50 teenagers on a government exchange program went to visit one). One cannot help but feel the awfulness of the past when walking through a crematorium where literally thousands of people were burned or standing beside the massive ashen hillside where the victims’ ashes were thrown. These places force people to face the realness of the past. These places make the past personal, and make people more human.

It is one thing to hear stories of atrocious yet vague horrors of concentration camps. But it is far different, far more heart-teaching and person-forming, to read the plaques that victims’ families have placed on the wall beside the crematorium ovens or the crosses and ash-gray boulders that have been landscaped into the ash-grave hill so that no trees or wayward feet can accidentally or purposefully mar the sacredness of the ground. The Holocaust becomes real when you see that the thousands of individual persons who died under your feet had lives, families, hopes, dreams, ideas–everything that every other person alive has ever had. Remembering the awfulness of the past is essential to realizing the essential humanity that comes with being a human being, how one feels when they are pulled apart by the deaths of thousands of people of a century ago in a place thousands of miles away from their own homes.

Concentration camps ultimately stand as testaments and reminders of the importance of humanity. That’s why they are so important, and why they are worth meeting.

Ethical Health Care Reform

Recently I heard a Christian TV personality refer to Obamacare as “iniquitous.” This started me thinking, What would make a health care funding reform scheme “iniquitous”? Or, although the words aren’t synonymous, what would make such a scheme unethical? What should go into ethical health care reform?

The answers to these questions are legion and conflicting. There are some who see government intervention as inherently wrong; for them, the free market is the key to ethical health care reform. There are others who distrust the free market, and consider some degree of governmental control to be the only ethical option. Some see personal mandates to buy insurance as unethical; others understand the mandates as ethical solidarity with our neighbor. Some ardently believe justice means everyone gets exactly the coverage or treatment they pay for; others just as ardently believe justice means everyone gets the same coverage and treatment.

What is ethical health care reform? There are many possible answers. I am not sure that Obamacare is any more or less ethical than the versions of Trumpcare that have been put forward. I am not sophisticated or smart enough to pontificate about the free market or theories of justice.

One thing I am certain of, however: Whether the system relies on markets or government regulations, whether there are more or fewer mandates or taxes, whether everyone gets the same coverage or not, one final measure of whether or not a health care system is ethical is how it treats those who are the poorest and most disadvantaged among us. If those who are least able to provide for themselves are not provided for and granted access to the system, then it is an unethical system.

Health care disparities: a pro-life issue

This month’s Health Affairs carries an article examining the correlation between one’s income and one’s perceptions about one’s own health and health care. Worldwide, those with the lowest incomes feel that their health is worse than those with the highest incomes do. They also are more likely than those with higher incomes to skip necessary treatment because they can’t afford it, and are more concerned that if they become seriously ill, they won’t get the best treatment their country has to offer. Perhaps not unsurprisingly, the United States has one of the greatest disparities between those with the lowest and highest incomes. But at least Americans are also the most aware of this disparity: 67% of US respondents, the highest number of any in the world, agree that “many” people in the US do not have access to the health care that they need. This is a good thing: awareness of a problem is the first step towards fixing it.

But what if we are aware of the problem, yet don’t really think it’s a problem? Only 54% of us in the US think it’s unfair that people with higher incomes can afford better health care than those with lower incomes. What if we see unfairness, but don’t recognize it as unfair?

In his post to this blog on June 6th, Mark McQuain asked what our number one bioethical issues are. As a physician who is privileged to care for a wide diversity of patients — from higher-ups in large corporations to those struggling to support a family by working two jobs and driving Uber — I see daily the very real differences between those who are granted full access to all our health care system has to offer, and those who get only the scraps from the health-care table: differences not just between healthy and sick but between life and death. The ones on the lower end are disproportionately the poor, the widows and single mothers, the aliens among us. I am pro-life; since access to health care can be a life-and-death issue, it is part of my pro-life identity to advocate for access to health care for all. The disconnect between recognizing inequity in access to health care and recognizing that we should try to do something about it is deeply disturbing to me. At this time and place, the injustice (and the recognition that it is injustice) in the inequity of access to health care based on income is the number one bioethical issue on my list.

Buck v Bell at 90 years old

Last month marked the 90th anniversary of Buck v Bell. Justice Oliver Wendell Holmes wrote the Supreme Court decision that ruled that Virginia’s sterilization law was constitutional and infamously stated regarding the litigant Carrie Buck, “Three generations of imbeciles are enough.”

In his 2016 book Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck (Penguin), Adam Cohen goes over the facts of the case as seen through its main characters. The picture that Cohen paints is grim. In his telling, by the time Carrie Buck’s case reached the Supreme Court, she did not have a chance to prevail. The system from top to bottom was wired against her. She was merely a trial case to establish the legality of state-sanctioned sterilization for the ‘feeble-minded,” leading to the sterilization of between 60,000-70,000 people.

Cohen’s book has received mixed reviews on stylistic grounds, some saying it spends too much time on one part of the story and not enough time on other parts. That said, none of the reviews I read suggests that he gets the story wrong.   Given the role that eugenics plays throughout Carrie’s story, this is especially chilling, because the book is more than history, it is a warning to those who want to remake humanity in their own image.

Cohen, a graduate of Harvard Law, states at the outset, “Another reason Buck v. Bell cannot be left in the past is that unlike so many of the Supreme Court’s worst rulings it has never been over-turned . . . In the twenty-first century, federal courts are still ruling that the government has the right to forcibly sterilize—and citing Buck v. Bell” (12).   While we would like to think something like this will never happen again, history does not allow us that luxury.

For those of us interested in bioethics, Cohen puts the matter plainly: “… Buck v. Bell remains critically important because its deepest subject is a timeless one: power, and how those who have it use it against those who do not” (12). If we devalue a person simply because they do not meet our standard of what a person should be, we are all devalued.   The story of Carrie Buck needs to be told and retold, and I am grateful to Cohen for retelling it.

 

 

 

Undermining the USPSTF: The most important stakeholders are the patients

A strange “health care” drama plays out daily in our clinics and hospitals. A healthy person has a medical test done (even though he or she is healthy): a blood test, a chest x-ray or mammogram, maybe an ultrasound of some body part. The test comes back abnormal. The patient (for she has now gone from being a healthy person to being a patient) is struck with worry, and undergoes a further round of testing to determine whether the initial, “screening” test was accurate. This more invasive, risky definitive testing causes the patient pain, complications, infections, further procedures to fix the complications. But the testing shows that the original screening test was wrong, and the patient is relieved of their worry and overcome with a sense of gratitude: “Yes, the follow-up surgery was painful, but at least it’s not cancer.” However, notice what caused the worry in the first place: not some symptom that they were experiencing, but a test that was performed on a healthy person. What a marvelous bit of sorcery: we take a happy patient, create unnecessary worry, then win their undying gratitude by performing risk-laden procedures on them to remove their worry!

There is something very intuitive about the concept that detecting a disease (especially cancer) early leads to better outcomes, that screening tests are inherently good. Yet when one studies the actual outcomes of implementing mass screening programs in a population of people who have no signs or symptoms of a particular disease, one finds to one’s surprise that, not infrequently, more people are harmed by our screening test than are helped (See: PSA testing, carotid ultrasounds, annual stress tests, etc). This harm may take many forms: worry, invasive procedures with all the risk they bring, radiation exposure, disfiguring treatments, stroke, even death. Yet there is no shortage of promoters of various tests that capitalize on our intuition that “More testing is better.”

In steps the United States Preventive Services Task Force (or USPSTF), a group of experts in preventive medicine and primary care (since it is mostly primary care providers who order screening tests). Their task is to examine the scientific evidence of the potential risks and harms of preventive strategies like screening tests, and to make recommendations based solely on that evidence. They strive to use the best scientific data available to benefit the most people possible. Even when their recommendations are unpopular (because they go against our intuition that more screening is better), they have a large effect on what tests are performed — and what tests insurance will pay for.

This week the USPSTF recommended against screening for thyroid cancer in people without symptoms. The data show that screening has found lots of thyroid cancer that never would have been found otherwise. The data also show that screening has not produced a reduction in death from thyroid cancer or an increase in quality of life. What it has produced is an increase in harms, such as injuries to vital nerves from the increase in thyroid surgery. Who knew?

Now there is legislation pending in Congress proposing that “stakeholders” — that is, specialists and industry representatives — be included in the membership of the USPSTF. This is a very bad idea. Consider: What do specialists like thyroid surgeons (who are not experts in screening for thyroid cancer; rather, their livelihood is tied to operating for it) or drug and device manufacturers (who sell the tests and ultrasound machines used to screen for thyroid cancer) add to the USPSTF’s process?  The main thing “stakeholders” (that is, people with a financial interest in seeing the test done) add is a conflict of interest. Whatever difference such “stakeholders” make would be tilted to the advantage of the few who stand to profit from the screening, and to the detriment of the many in the population who would be harmed from the screening. The USPSTF’s work must not be transformed from a transparent procedure that seeks to minimize harm into a get-rich-quick scheme.

All We Need is (Unconditional) Love

On March 24, 2017, Joe Gibes posted an entry on this blog, entitled “A ‘disabled’ person speaks out against a particular form of discrimination.”[1] That post featured links to several stories about Kathleen Humberstone, a young woman with Down Syndrome who spoke at a recent UN event commemorating World Down Syndrome Day, which was observed on March 21.

After reading through Joe’s post and the stories to which his post links, I’d like to add the following two very basic observations (which I will only state here – further elaboration shall have to await another time):

  • OBSERVATION #1: Thankfulness and disability are entirely compatible – indeed, one can be genuinely thankful for one’s disability. “Thank you Down’s syndrome!” Kathleen says enthusiastically, in her prepared remarks for the UN event.[2] It’s hard to imagine she doesn’t mean this sincerely.
  • OBSERVATION #2: As Hans S. Reinders has said repeatedly,[3] often the thing that people with profound intellectual disabilities need most is simply to be chosen as friends. This point is easily generalizable to persons with any kind of disability—very often, what we “need” most is simply friendship, not “healing” or “relief” or “freedom” from the (supposed) “burden” of disability itself.

With continued developments in prenatal genetic testing techniques, including the relatively recent advent of non-invasive prenatal testing (NIPT), it has become even easier to detect, at earlier and earlier points in pregnancy, the presence of disabilities such as Down syndrome. And this, of course, opens the door to so-called “selective termination” of unborn children who test “positive” for such conditions.

For Denise Humberstone, Kathleen’s mom, this makes no sense whatsoever. Why shouldn’t we accept all persons, Denise wonders, including those with Down syndrome and other disabling conditions, with the same kind of unconditional love that we would offer to any other, nondisabled person?

“Whatever happened to unconditional love?” she asks. “When did society decide we should want and love a child only if it is as perfect as medical research allows?”

In a Facebook post[4] written just prior to Kathleen’s speech at the UN event, Denise addresses the “unrealistic demands for perfection” that appear to drive so many of these decisions to abort unborn children diagnosed with Down syndrome and other disabilities:

I’m also wondering if in parallel to scientific research, these unrealistic demands for perfection stem from the fact that we are also now living in a world where we can not only get anything we want off the internet but that item always comes with a return form should it not be up to your expectations. Not perfect? Bam! Return it, free-post, no questions asked, item will be replaced in no time….

What are we teaching our children? People are worthy of life and love only if they are perfect? We can’t cope with children unless they’re perfect? Your marriage/partnership won’t last unless your children are perfect? Siblings will be ok as long as they are all perfect? I can assure you that my friends are not happier because they don’t have a child with special needs…. There is always something to be unhappy about, it’s human nature.

So why can’t we just go back to the basics and try and love unconditionally? Why can’t we just deal with the hand we’ve been dealt… and rise up to the challenges that life throws at us?

Around the same time as Joe posted his blog entry about Kathleen Humberstone, quadriplegic and disability advocate Joni Eareckson Tada posted a blog entry[5] about World Down Syndrome Day. Here’s what she wrote:

I love smiling children… the image imparts such hope and joy, reminding us we are all made in the image of God. I especially delight in the smile of a child with Down syndrome. Anyone who has rubbed shoulders with someone who has Down syndrome will rave about the love, openness, and zest for life they bring to every family. Their laughter and joy is infectious. Today, as we celebrate World Down Syndrome Day, I’m reminded of a touching video I saw two years ago – titled “Dear Future Mom,” it shows children and teens with Down syndrome. Each has something brief and sweet to say about their disability. Then, they look into the camera and address the worries of any pregnant woman who is fearful about carrying a child with Down syndrome.

This video blessed me so much, I just had to share it with you. Perhaps you know of an expectant mother who has learned her baby has a genetic disorder. Please share this with her – the smiles on the faces of these young people will ease fears and give hope, helping her welcome her precious baby into the world.[6]

In the end, Kathleen Humberstone and the children and teens featured in “Dear Future Mom” remind us of what we all need the most: unconditional love.

 

[1] See http://blogs.tiu.edu/bioethics/2017/03/24/a-disabled-person-speaks-out-against-a-particular-form-of-discrimination/.

[2] http://www.bbc.co.uk/newsbeat/article/39339338/downs-syndrome-teenager-addresses-the-un-in-geneva

[3] See, for example, his Receiving the Gift of Friendship: Profound Disability, Theological Anthropology, and Ethics (Grand Rapids, MI: Eerdmans, 2008).

[4] https://www.facebook.com/denise.humberstone/posts/10155948159319126?comment_id=10155950465429126&reply_comment_id=10155950568324126&notif_t=feed_comment_reply&notif_id=1488705525554890

[5] http://www.joniandfriends.org/blog/world-down-syndrome-day-2017/

[6] “Dear Future Mom” can be viewed here: https://youtu.be/Ju-q4OnBtNU.