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.

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.

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.

The Gift of Finitude

I’ve been thinking a lot lately about finitude. About limits. Incompleteness. Even failure.

Like the friend of a friend who is dying and has just been admitted to hospice, whose young teenaged daughter is facing the prospect of a life without her mother.

Like the colleague who is grieving the loss of both a spouse and a parent within a month of each other.

Like my power wheelchair that keeps breaking down, making everyday activities significantly more challenging.

Like the never-ending “to-do” list that seems to be anything but finite, and never quite seems to get any shorter.

Life is, in a word, full of limits. Boundaries. Unavoidable stopping points.

Or is it?

What if we could transcend our limits, as recent developments in genetic and related technologies (e.g., CRISPR) seem to promise? What if, through genetic manipulations of various sorts, we could significantly reduce our limitations—eliminate specific diseases and disabling conditions, improve cognitive function, “select” for desired physical traits, and so on?

If we could do these things, should we do them?

Of course, as anyone who has followed the field of bioethics for even a short period of time knows, these questions are neither new nor hypothetical. In many ways, the “future” is already here: we “enhance” ourselves, “transcend” limits and boundaries, and otherwise seek to “overcome” finitude in a myriad number of ways, on a daily basis. And much of this is salutary.

Still, it’s always worth pausing to consider: supposing finitude could be eliminated entirely from our lives (which seems extraordinarily doubtful), is it the sort of thing we ought to try to eliminate? Put differently: is there anything good about finitude, such that we ought to embrace it (even if in a qualified way)?

Gilbert Meilaender, a bioethicist and Distinguished Fellow of The Center for Bioethics and Human Dignity, suggests that there is something good about finitude. In a reflection on the “created duality” of our human nature—we are simultaneously both “free” and “finite”—Meilaender observes that this “two-sidedness” to our nature both opens up possibilities and imposes certain limits upon us. We are, he observes,

created from dust of the ground—finite beings who are limited by biological necessities and historical location. We are also free spirits, moved by the life-giving Spirit of God, created ultimately for communion with God—and therefore soaring beyond any limited understanding of our person in terms of presently “given” conditions of life…. Made for communion with God, we transcend nature and history—not in order that we may become self-creators, but in order that, acknowledging our Creator, we may recognize the true limit to human freedom. Understanding our nature in this way, we learn something about how we should evaluate medical “progress.” It cannot be acceptable simply to oppose the forward thrust of scientific medicine. That zealous desire to know, to probe the secrets of nature, to combat disease—all that is an expression of our created freedom from the limits of the “given,” the freedom by which we step forth as God’s representatives in the world. But a moral vision shaped by this Christian understanding of the person will also be prepared to say no to some exercises of human freedom. The never-ending project of human self-creation runs up against the limit that is God. It will always be hard to state in advance the precise boundaries that ought to limit our freedom, but we must be prepared to look for them.[1]

I am inclined to agree with Meilaender. Moreover, as I have shared in an autobiographical essay published recently,[2] my own experiences as a person with a physical disability have taught me valuable life lessons that, arguably, might not have been learned otherwise—lessons such as the value of patience and endurance, accepting my limits (an ongoing struggle, I must admit!), and even the importance of having a sense of humor at the (sometimes ridiculous) circumstances in which one finds oneself. Our limits shape our character, our career, and our life choices as much as do our “freedoms”—often in surprising and unexpected ways, and frequently for the better.

None of these reflections, of course, even begin to scratch the surface of the “what?”, “where?”, “when?”, “how?”, or “why?” questions related to the ethical permissibility (or lack thereof) of pursuing various genetic, reproductive, or other technologies. Nor do they, by themselves, tell us whether (and when) we ought or ought not to avail ourselves of abortion, physician-assisted suicide, euthanasia and the like.

They do, however, remind us of one very simple, yet all-too-often overlooked fact: finitude is, in many ways, a gift. Let us not neglect it.

 

[1] Gilbert Meilander, Bioethics: A Primer for Christians, 3rd ed. (Grand Rapids, MI: Eerdmans, 2013), 3-5.

[2] See “Why am I Disabled? Reflections on Life’s Questions and God’s Answers,” in the Beyond Suffering Bible (Tyndale, 2016), available at beyondsufferingbible.com and http://www.joniandfriends.org/bible/.

A Conflict of Interest is NOT an Ambiguity

Oregon Senate Bill 494 has been described as a “euthanasia bill” that is “intentionally ambiguous,” and as a piece of legislation that would “allow the starving and dehydrating of patients who suffer from dementia or mental illness.”

What has received less press is the composition of the 13-member committee who would be perpetually in charge of advance directive forms in the state, with no oversight by the legislature. Who would those persons be? According to the bill, the 13-member “Advance Directive Rules Adoption Committee” would include

  • The Long Term Care Ombudsman or that individual’s designee
  • 12 members appointed by the Governor
    1. one representative of primary health care providers
    2. one who represents hospitals
    3. one clinical ethicist affiliated with a health care facility
    4. two health care providers with palliative care or hospice expertise
    5. one who represents persons with disabilities
    6. one who represents “consumers of health care services”
    7. one who represents “the long term care community”
    8. one who has expertise in “advising or assisting consumers with end-of-life decisions”
    9. three members from among those proposed by the Oregon State Bar:
      • an expert in elder law
      • an expert in estate planning
      • an expert in health law

Why is the State of Oregon so interested in making sure their appointees are in charge of advance directives?  Is it because the state is so concerned about the health of its citizens?  Hardly, when those citizens in the health care system are described not as patients, but consumers.  Stacking the committee with lawyers who are experts in estate planning and elder and health law seems to assure the state that they will get their pound of flesh.  The State is aware of this:  deceased consumers no longer need their money or their organs.  The conflict of interest inherent in this scheme is not ambiguous.

 

— D. Joy Riley, M.D., M.A., is executive director of The Tennessee Center for Bioethics & Culture.

Gattaca validated

In the made-for-bioethics movie Gattaca, when the main character Vincent is born, a nurse in the delivery room draws a drop of his blood, places it in the nifty instant genetic analyzer, and intones, “Heart disorder: 99% probability. Early fatal potential: life expectancy 30.2 years.” (Spoiler alert!) However, Vincent doesn’t let this genetic version of a horoscope control his life, but goes on to beat the odds — and his society’s rampant genetic discrimination — to live and succeed, proving that, contrary to his society’s beliefs, genetics are not determinative.

Now a study in the New England Journal of Medicine has confirmed the message of Gattaca. The study examined patients who have genetic risk factors known to predict heart disease (“Heart disorder: 99% probability”). It also analyzed these patients’ heart-healthy behaviors: eating a reasonable diet, getting some exercise, avoiding smoking, and the like. The study showed that even for those with the highest genetic risk of heart disease, patients who practiced heart-healthy behaviors had less heart disease than patients who didn’t; and that the patients in the highest genetic risk group had the greatest reduction in risk when they practiced such behaviors. In fact, they cut their risk in about half.

Sure, genes confer risk for heart disease. But contrary to popular understanding, they do not confer inevitability.

Over and over I hear my patients say to me, “It’s in my genes. It must be genetic.” They usually are talking about something that they feel they have no control over. Too often they have swallowed the line from the press and pop science, the line that says that genes are determinative. If you are looking to absolve yourself of responsibility for who you are and what you do, the whole determinism thing is extremely convenient: “I can’t help it: it’s in my genes,” you say, smiling gently as you take one more drink too many with your mistress while driving 85mph down the highway, comforting yourself with the “facts” that alcoholism, infidelity, and risky behavior are all genetically determined.

However, if you feel that you’re a responsible human being whose choices actually mean something, you might be thinking that the whole determinism thing is a little fishy.

Genes do exert influence. They are a risk factor in many conditions. But they have been portrayed as way more controlling than is warranted. We are not puppets dangling on doubly-helical strings. There are many things influencing our lives: environmental and socio-economic and biologic and emotional and spiritual and, yes, genetic factors. They all affect and expand or limit our choices. But it is still we who must make the choice. To the situations that affect us we are to a greater or lesser extent able to make response — we are “response-able” — and must not take refuge in our genes, or any other abstracted part of our humanity, to reduce ourselves to automatons following an inexorably pre-determined path.

Medical errors and more medical errors

Last week the BMJ reported that annually, there are 251,000 hospital deaths due to preventable medical errors in the US. There’s some debate about the calculations that they used to arrive at that number, and about what exactly constitutes a medical error. However, rather than quibble over the fine points, let’s acknowledge that medical errors are an ethical problem that must be addressed. In this post I would like to widen the conversation beyond the hospital walls. Below is a sample of some deaths due to preventable medical errors that weren’t included in the BMJ calculations (most of these ones happen outside of hospitals); nevertheless, they too affect thousands of people annually. I will also attempt to provide a taxonomy of the relevant errors.

Deaths due to the inability of the patient to obtain medical care because they couldn’t afford the care or the insurance — unknown number. The medical error here is a systemic one, the rationing of health care on the basis of who can pay for it.

Deaths of patients due to their being the subjects of human research — unknown number. This is peculiarly prevalent among embryonic patients (as Jon Holmlund wrote about last week). The medical errors include the failure to extend to embryonic research subjects the protections enumerated in the Declaration of Helsinki. There is also a category error: classifying embryonic patients as something other than human beings.

Deaths of embryonic or fetal patients through elective induced abortion — 977,000 (2014 data). The same category error as previous comes into play here: the failure to recognize the humanity of the unborn human.

Deaths of patients from drugs prescribed by their physician for the purpose of suicide — the numbers data is incomplete. The number is relatively low but projected to grow as more jurisdictions legalize physician-assisted suicide. The errors here include a professionalism lapse (forgetting that the professional status of medicine was established, among other things, on the dictum that doctors do not give deadly drugs, even if asked to do so). There is also the error of hubris: the belief that doctors can decide that someone should be allowed to kill themselves.

Preventable medical errors, all.

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.

Granted, thirteen out of 589,306 isn’t a lot. But extrapolate that to seven-plus billion people on the planet, plus all the fully-penetrant genetic conditions these researchers did not check for, and there are probably a lot of what the press calls “genetic superheroes” among us. In fact, this study is part of something called “The Resilience Project,” which aims to find a lot more people like these thirteen and figure out what makes them “resilient,” that is, able to carry fully-penetrant genes for lethal diseases without carrying the diseases themselves. In line with the reigning biogenetic paradigm, the project’s focus is searching for other genes that make these people resilient by canceling out the bad-disease genes. Maybe they will find them, and if so, be able to help those people with those diseases. But if not, I hope that they will also look outside of the genetic determinism paradigm for non-genetic factors; I hope that they will consider the possibility that we may not be simply the product of our genes.

This study should give us a great sense of humility that, despite wonderful advances in our understanding of the wonder of genetics, there is probably more that we don’t understand about how genes work than we do understand. This humility should lead us to question anyone who would attempt to efface our humanity or responsibility for our actions on the basis of an appeal to genetic determinism. And it should call into question the practice of using any genetic test, preimplantation or post-implantation, as the basis for deciding whether a human embryo or fetus lives or dies.