The aftermath of a state eugenics program

 

Elaine Riddick was 14 when she became pregnant by rape in North Carolina in 1968. A committee of five men called the Eugenics Board decided that, “Because of Elaine’s inability to control herself, and her promiscuity — there are community reports of her ‘running around’ and out late at night unchaperoned — the physician has advised sterilization. … This will at least prevent additional children from being born to this child who cannot care for herself, and can never function in any way as a parent.” A few hours after her son was born, a physician sterilized Ms. Riddick without her knowledge. (I am astonished to discover that there was still a Eugenics Board in my lifetime; I had thought that was all pre-WWII)

Now, more than 40 years later, another five-person board, the Governor’s Eugenic Compensation Task Force, has proposed giving $50,000 to each living victim of its eugenics program. Of the 7,600 people sterilized under the program between 1929 and 1974, some 2,000 are still alive. Ms. Riddick is incensed at the notion: “Fifty thousand dollars? Is that what they think my life is worth? How much are the kids I never had worth? How much?”

North Carolina was only one of more than 30 states that carried out eugenics programs that forcibly sterilized up to 65,000 people, but it had one of the more robust programs.  “The board’s declared goal was to purify the state’s population by weeding out the mentally ill, diseased, feebleminded and others deemed undesirable. . . In a 1950 pamphlet, the Human Betterment League of North Carolina said the board was protecting ‘the children of future generations and the community at large,’ adding that ‘you wouldn’t expect a moron to run a train or a feebleminded woman to teach school.'” The state carried out its program using deception if necessary, telling subjects that they were going in for appendectomies or that the operations were reversible.

Who knows which accepted, scientific practices of today will be the stuff of attempts at corrective action of tomorrow? Embryonic stem cell research? Commercial surrogacy? Paying young women to “donate” eggs? Human organ trafficking? Whatever it will be, as the story of Elaine Riddick demonstrates, money can never compensate someone for having their basic human dignity ignored and trampled upon.

(All quotes from the LA Times article link)

On the dignity of being a burden

My candidate for one of the most unhelpful (although well-meant) comments patients make in the discussion of end-of-life and other care issues:

“I don’t want to be a burden on anybody.”

Why unhelpful? Because we can have very little control over whether we will become a burden. A burst aneurysm, a car accident, or some other unforeseen event, and wham! we’re a “burden,” dependent upon others, through no fault or planning of our own. And people somehow have got the idea that being dependent on somebody else diminishes their dignity.

But not only is this not a Christian idea, it is an anti-Christian idea. Maybe so many Christians cling to it because we were raised on the pious-sounding but non-Bilblical nostrum that “God helps those who help themselves.” Or maybe it’s because we have appropriated the assumptions of our independent, individualistic culture. Whatever the reason, John Stott provides a powerful corrective in the final book he wrote before his death, The Radical Disciple (IVP Books, 2010). In the chapter on “Dependence” he points out that we all come into the world, and most of us leave it, dependent on the love and care of others (pages 110-111). “And this is not an evil, destructive reality. It is part of the design, part of the physical nature that God has given us.”

He continues, “I sometimes hear old people, including Christian people who should know better, say, ‘I don’t want to be a burden to anyone else. I’m happy to carry on living so long as I can look after myself, but as soon as I become a burden I would rather die.’ But this is wrong … the life of the family, including the life of the local church family, should be one of ‘mutual burdensomeness.’ ‘Carry each other’s burdens, and in this way you will fulfill the law of Christ’ (Galatians 6:2)

“Christ himself takes on the dignity of dependence. He is born a baby, totally dependent on the care of his mother. He needs to be fed, he needs his bottom to be wiped, he needs to be propped up when he rolls over. And yet he never loses his divine dignity. And at the end, on the cross, he again becomes totally dependent, limbs pierced and stretched, unable to move. So in the person of Christ we learn that dependence does not, cannot, deprive a person of their dignity, of their supreme worth. And if dependence was appropriate for the God of the universe, it is certainly appropriate for us.”

Bioethics and Christmas part 2

Even those without much Christian background know that Christmas is about the birth of the baby Jesus. Christmas carols, nativity scenes and creches, and even the pictures on Christmas cards depict the miraculous birth. What is interesting for bioethics is that the story starts before the birth.

Luke tells us in the first chapter of his gospel that the story began with an angel telling Mary that she was going to conceive a child through the intervention of the Holy Spirit without the usual sexual process. God didn’t take much time to do that because by the time she could get ready and hurry off to her relative Elizabeth’s house she was already pregnant. When she got there Elizabeth was in the sixth month of her pregnancy with her own angel-announced child. When Mary entered Elizabeth’s house, John (Elizabeth’s baby who later identified Jesus as the lamb of God) leapt in recognition of the presence of Jesus in Mary’s womb.

This detail of the story suggests that the incarnation impacts how we think about unborn human beings. Since Jesus became a human being it means that human beings have a special status as members of the class of beings that God chose to become. His beginning human life as an embryo and fetus that went through the usual nine months of prenatal life implies that the special status of human beings applies to human beings before they are born. The recognition between John and Jesus suggests the continuity of identity of individual human beings from early prenatal life to after birth.

Remembering that Jesus’ incarnation began nine months before his birth reminds us of the moral value of unborn lives. We should be just as amazed by that as those the shepherds told were amazed about his birth.

Bioethics and Christmas

I just got back from the Taylor Christmas chapel and as my thoughts have been focused on the amazing incarnation of Jesus, I thought I would share some thoughts over the next few weeks on how Jesus’ incarnation impacts bioethics.

One of the most fundamental principles of bioethics is the inherent value and dignity of all human life. Our ideas of equality for human beings and equal human rights, moral status, and justice all depend on our understanding of the value that each of us has as a human being. When Christians think about the value of human beings we usually think about creation and our biblical understanding of human beings from the account of creation in Genesis 1 and the moral laws given to Noah in Genesis 9. Both of these passages refer to human beings being made in the image of God. We find an understanding of our inherent moral worth in how we were made.

Jesus’ incarnation adds richness to our understanding of who we are as human beings. God made us in his image not just so that we could be enough like him that he could communicate with us and have a relationship with us, but so that Jesus could become one of us. He made us able to choose between right and wrong, knowing we would choose the wrong. He planned all along to have Jesus, the Son, leave his glory as eternal God to become one of us, so that he could be the ransom for our sin. Being made in God’s image helps us see why every human being has moral value. Being one of the class of beings that God chose to become, and for whom he chose to die helps us see that value even more.

Glory to God in the highest.

Musings from a nursing home

 

It has been five months today since my sister had the first of many brain surgeries for a burst aneurysm. I was visiting her yesterday, and the visit prompted the following random bioethical thoughts.

Health-care payment reform – My sister is in a nursing home, and until recently had been receiving various therapies. Earlier this month her insurance ran out, and suddenly — without notice — now she receives none.

This situation is not surprising, given the claptrap patchwork of healthcare payment that passes for a system in our country. The health-care payment reform debate has been so politicized — that is, it has become a tool of political power that each party wields as a weapon against its opponent — that rational, ethical discourse on the subject seems to have been left in the dust. There is a more ethical way to deliver health care; however, as long as we leave it up to lobbyists, interest groups, and two political parties that seem more intent on power than government, we will see increasing numbers of people left in the medical and political dust.

Human dignity – By some standards, my sister might be thought of as having lost her human dignity. Before June 11th she was an energetic, triathlon-running, blog-posting woman; now we are excited if she can manage a hand-squeeze or a groan. By some estimations, she might be said to have a “life not worth living.” According to some bioethicists, she doesn’t have what it takes to be treated with the respect due to human persons. I’m sure glad they haven’t been taking care of her these last five months.

The search for a cure – Putting aside for the purpose of argument all of the insurmountable hurdles that have to be overcome, imagine for a moment that the fondest dreams of certain researchers reach fruition, and that embryonic stem-cell therapy for brain trauma becomes a reality. Imagine (you have to imagine, because it is all imaginary at this time, never mind the rhetoric to the contrary): What if my sister could walk and talk and laugh again, if only we were willing to sacrifice an embryo, “a glob of cells smaller than the period at the end of a sentence,” maybe an embryo leftover from IVF in fertility-clinic-freezer limbo somewhere?

Much of the Church has taken a stand against embryonic stem-cell research, as is right. But it’s easy to oppose something that has no forseeable hope of becoming reality. What would happen if the unthinkable became possible? Would the Church still stand against it? If cures for your daughter’s diabetes, your son’s leukemia, your wife’s brain tumor, your mother’s Alzheimer’s, were an embryo away? Would we be like the liberal bioethicists and find justifications for what we now rightly oppose? Or would we continue to respect all humans, no matter what size or developmental stage, even to our own hurt?

The Help and what it means to be human

I am currently reading The Help by Kathryn Stockett. I saw the movie first and as I read the book it really is true the book is better, even though the movie is very well done. For those who haven’t done either one, the story is about a young white woman in Jackson, Mississippi who decides to write a book that tells the stories of African American maids working for white families in Jackson in the early 1960s. But the book, like her book, is mostly about those women and the truth of what their lives were like.

As I experience their lives in the midst of the novel I have been thinking about the ethical issues that were going on during the turbulent times of the civil rights movement in the sixties. The major issues revolve around what it means to be human and how one human being should treat another. That resonates with what is at the heart of many of the issues we face in bioethics today.

Aibilene is the first of the maids to agree to tell her story. Interestingly she is a woman with a strong Christian faith who writes out her prayers to God and sees him answer as she expresses her concern mostly for others and occasionally for herself. She models virtues of love and compassion while hurting from the injustice of life in a world where she is not seen as a person of full moral value. She is not perfect, but her virtues and endurance under hardship demonstrate a humanity that touches me. It is amazing that as a society we could have told her she was not fully human.

How many are being told today that they are not fully human by the things our society chooses to do?

A Lesson from the “Ethically Impossible” Guatemalan STD studies

Yesterday the Presidential Commission for the Study of Bioethical Issues announced the release of its report titled “Ethically Impossible” detailing its investigation into the U.S. Public Health Service studies conducted in Guatemala in the 1940s that involved intentionally exposing vulnerable populations to sexually transmitted diseases without the subjects’ consent. They concluded that “the Guatemala experiments involved unconscionable basic violations of ethics, even as judged against the researchers’ own recognition of the requirements of the medical ethics of the day.”  Commission Chair Amy Gutmann said, “A civilization can be judged by the way that it treats it most vulnerable individuals…in this dark chapter of our medical history we grievously failed to keep that covenant.”

It seems to me that people are likely to respond to this report by saying, “Of course that was wrong.  No one would do that today.” But I think the most important lesson to learn from the report is why those who approved these obviously unethical studies did so.  The report shows that they justified what they did by citing the urgent need for proven methods to treat and prevent STDs in the military forces fighting World War II.  They were being good utilitarians.  When there is much good that can be done for many people by doing something it is easy to overlook those who are being hurt and whose inherent value as human beings is being ignored.

It happens when the need for organs to be transplanted causes people to suggest paying donors for their organs without considering the value of those who will be exploited.  Or when the desire to provide cures for spinal cord injuries or Parkinson’s disease leads people to destroy embryos to use their stem cells for research.  If we focus solely on what we can accomplish without being concerned about protecting those who are unable to protect themselves we fall too easily into immoral behavior.

From IVF to human trafficking, and how liberal bioethics led the way (actually, it followed)

 

Ross Douthat of The New York Times wrote recently of The Failure of Liberal Bioethics to provide any ethical guidance in the area of reproductive technologies. He recounts how liberal bioethicists, for all their eloquence about monitoring and controlling new reproductive technologies, really just act as a rubber stamp for whatever anybody wants to do, finding reasons “to embrace each new technological leap while promising to resist the next one . . . You can always count on them to worry, often perceptively, about hypothetical evils, potential slips down the bioethical slope.  But they’re either ineffectual or accommodating once an evil actually arrives. Tomorrow, they always say — tomorrow, we’ll draw the line. But tomorrow never comes.”

This marked failure in line-drawing in years past is bearing grim fruit today. In the August 4th New England Journal of Medicine, George Annas wrote of Canadian legal efforts to regulate the international trade in reproductive medicine. In order to bypass local regulations and expenses, people buy sperm from one country, ova harvested from women in another country, and rent a woman to act as a gestational surrogate from a third country, to try to have a child. These are just the sort of practices against which “conservative” bioethicists, those concerned with human dignity, the meaning of procreation, and the commodification of children, have warned; and about which “liberal” bioethicists have opined, “Well, there’s a theoretical risk here, we’ll have to watch that —” and then watched as theory became practice and practice became madness. Annas writes of the fear of many that reproductive medicine is “becoming a branch of international trafficking in women and children.”

This fear is reality. Last winter the Wall Street Journal ran an article featuring PlanetHospital.com LLC, a California company that scours the globe to find the “components” for its “business line” of internationally trafficked reproductive materiel and technology. ”PlanetHospital’s most affordable package, the ‘India bundle,’ buys an egg donor, four embryo transfers into four separate surrogate mothers, room and board for the surrogate, and a car and driver for the parents-to-be when they travel to India to pick up the baby.” The international nature of this enterprise places it under the radar of any governmental regulation that might interfere with the “business line,” and there does not appear to be much internal ethical regulation on the part of the company itself; anything goes, even when an apparent pedophile wants to have a child. As chief executive of PlanetHospital Mr. Rupak says, “Our ethics are agnostic. How do you prevent a pedophile from having a baby? If they’re a pedophile then I will leave that to the U.S. government to decide, not me.”

If liberal bioethicists continue to have their way, the unthinkable practices of today will become the commonplaces of next week. Annas bears disquieting witness to this when he writes of ”acts that were once thought to be so universally condemned that prohibitions against them could be incorporated in an international treaty.  These prohibitions include the knowing creation of a human clone, the creation of an embryo from the cell of a human fetus or from another embryo, the maintenance of an embryo ex utero for more than 14 days after fertilization, the use of sex-selection techniques for a reason other than the diagnosis of a sex-linked disorder, the performance of germline genetic engineering, the use of nonhuman life forms with human gametes, the creation of chimeras for any purpose, and the creation of hybrids for reproduction.”

How many of these “acts that were once thought to be so universally condemned” are already standard procedure today? If liberal bioethics continues to have its way, which of today’s unthinkables will be the next California company’s “business line?”

 

(If you have time, read all three articles.  They are very disturbing. If you think that the work of CBHD is unimportant, you may just change your mind.)

STEPS in the wrong direction

One of the major tasks of bioethics since its inception has been to ensure the ethical conduct of scientific experiments involving human subjects.  One of the cornerstones of ethical experimentation (indeed of all medical treatment that respects the human dignity of the patient) is the concept of informed consent:  the study participant should know up front the purpose, potential benefits, and potential risks of participating in the study.

In the 1990’s, Parke-Davis, the manufacturer of the anti-epileptic medication Neurontin (generic name: gabapentin), conducted a trial called Study of Neurontin:  Titrate to Efficacy, Profile of Safety (STEPS).  This was a Phase 4 trial (performed after the medication was already on the market) whose professed objective was to study the efficacy, safety, tolerability, and quality of life among gabapentin users as the drug’s dose was increased.  Parke-Davis recruited physicians to enroll patients into the trial;  in all, 772 physician-investigators enrolled a total of 2759 patients into the trial.  The study resulted in two published papers.

It all sounds innocuous enough, no?

Recently, through legal action, all of Parke-Davis’s internal and external documentation relating to STEPS became available for review.  In these documents, a different picture of the trial’s objective comes to light.  A few quotes from the company’s internal memos:

– “Some indicators of [the study’s] success include 20% increase in new patients’ starts in March and a 3% market share in new prescriptions. . .”

– “STEPS is the best tool we have for Neurontin and we should be using it wherever we can.”

– “. . .at the very least, we should be looking to place as many managed-care patients as feasible in [STEPS] to prevent Lamictal [a competitor’s drug] starts.”

– Multiple strategic planning documents cite the STEPS trial itself, not the trial’s findings, as a key marketing tool for gabapentin.

– Parke-Davis monitored and analyzed the physician-investigators’ prescribing habits, finding increased prescribing of gabapentin among STEPS participants compared to a control group of non-participants.

Apparently, contrary to the trial’s stated objective, the purpose of STEPS was not science, but marketing;  the true subjects of the trial were not the patients, but the physicians.  The most important measured outcome of the trial was not the safety or efficacy of gabapentin, but whether and how much doctors changed their prescribing behavior as a result of participating in the trial.

Is this an ethical trial?  Some might say, sure, there was nondisclosure of the true intent of the trial, but c’mon, it wan’t Tuskegee, right?  I mean, nobody was hurt (unless you count the 11 patients who died, the 73 who experienced serious adverse events, and the 997 who experienced less serious adverse effects).

No, this was an unethical trial.  There could not be informed consent, as the true purpose of the trial was not revealed to physicians, patients, or IRBs.  In addition, using any human being in such a deceptive manner for monetary ends is inconsistent with respect for human dignity.

 

An article that reviewed STEPS and provided the quotes above appeared in the June 27 Archives of Internal Medicine;  the abstract can be accessed here.

 

Human Rights and the Significance of Human Dignity

One of the current students in the MA in Bioethics program at Trinity has also been observing in my medical office the past few months.  When there is a lull in the care of patients our conversations often turn to bioethics (while the paperwork on my desk waits a little longer to be attended to).  The other day we were talking about the concept of human dignity and whether it was a morally significant concept.  We agreed that it was and that we need to be clear that it has to do with the intrinsic worth of human beings.  It also needs to be distinguished from the concept of being dignified which is a very different cultural concept with which it is confused.

That discussion made me think about an essay by David Little in the book Prospects for a Common Morality. In his essay Little points to the impact of the rising concept of universal human rights that is changing the face of our global community.  He says that “some advocates and defenders of human rights seem to suggest that there are certain moral beliefs and concomitant claims about the world that are universally true and universally justified.”  This universally justified understanding of human rights is closely related to the idea that human beings have intrinsic moral value or dignity.  The impact this idea is having in global political processes makes it clear how significant this idea really is.