The cost-effectiveness of prenatal screening for Down syndrome

Because the British National Health Service is a governmental single-payer system decisions about what is covered in that system involve public discussion. That leads to public discussion of ethical issues that frequently manage to avoid the public eye in the US. A recent article in the Daily Mail talks about an issue that is being debated by the British NHS. They are currently deciding whether noninvasive prenatal testing, also known as prenatal cell-free DNA screening should be covered by their health system and whether it should be covered only for those at high risk for chromosomal abnormalities or as a general screening test. This test identifies chromosomal abnormalities in a fetus more accurately than previously available screening tests, but is more expensive. The most common abnormality identified by this test is Down syndrome.

Some of those involved in this discussion have suggested, according to the Daily Mail article, that an analysis of the lifetime costs of caring for children with Down syndrome should be included in a cost-effectiveness analysis of whether this test should be provided for general screening. That suggestion has raised significant concern among parents who have children with Down syndrome. Their concern is based on a significant ethical issue. For the cost of caring for children with Down syndrome to be considered as a part of the cost-effectiveness of this screening test one would need to be balancing the cost of using this screening test for general screening against the costs of care that would be saved by the system not having to pay for the care of those fetuses with Down syndrome who were aborted. That means that a child with Down syndrome who is allowed to live is being seen as a financial liability to the system and that the cost of medical care for that child is being used to justify the cost of screening. What would be left out of such a cost effectiveness analysis would be the value of the lives of those children with Down syndrome. That is why the parents of children with Down syndrome are justifiably upset.

Cost-effectiveness analysis can be appropriate when we are comparing alternate ways to treat a disease or save a person’s life, but we need to be careful that what we are analyzing is the comparative costs of treatments that provide benefit to the person being treated. We should not do a cost-effectiveness analysis based on saving costs by ending the lives of those for whom we should be caring. This applies whether those lives are lost by abortion or by euthanasia.

Gender Indiscrimination

Steve Phillips has recently written in this blog about gender dysphoria and our culture’s struggle to respond consistently to it. Please see here for that discussion. North Carolina recently passed a law requiring individuals to use the bathroom of their biologic sex rather than their self-identified gender. This has resulted in claims of gender discrimination and gender phobia against those who do not wish to be in the same shower or bathroom with someone of the opposite biological sex, regardless of how that someone chooses to self-identify his or her gender.

In early June, a young high school student in Alaska, whose biological sex is male but who identifies as a female, recently placed 5th and 3rd place in the girls 100 meter and 200 meter state high school track meet. Interestingly, the cries of discrimination focused almost exclusively on the claim that this was unfair to the other women running in the same race. Said differently, there have been extremely few claims of gender discrimination or gender phobia against those who do not want to be in the same sporting event with someone of the opposite sex, regardless of how that someone chooses to self-identify his sex.

Why is there a difference?

Notice that in both cases, opposing sides agree that males and females are different, deserving different bathrooms and different sporting competitions, the latter a successful result of Title IX federal regulations beginning in the 1970’s. Both sides seem to agree that the issue is how to discriminate who belongs in which group. In both examples, one side argues that subjective self-identification is a sufficient claim to gender group membership while the other side demands objective biological criteria. So who is right?

And why is the girl who finished 6th in the 100 meter Alaska High School Track meet less likely to be called bigoted if she complains about having to race against the boy who identifies as a girl as when she complains about having to share the shower with him after the race? If the difference is one of fairness/justice in public sports competition, it is unclear why we should elevate public sports competition above private social interpersonal contact in terms of our bigotry tolerance.

But let’s say we do. Both the IOC and the Women’s Sports Foundation have position statements that effectively argue that the issue comes down to objective biological criteria, namely testosterone levels. At least in competitive sports, subjective self-indentification is not a sufficient claim to gender group membership.

But what about public bathrooms? Curiously, the Justice Department is using Title IX, that landmark federal regulation banning sex discrimination by schools that receive federal funds, to effectively require schools to be rather gender indiscriminate. Effectively, they are requiring schools to allow students to use sex-segregated bathrooms based on their self-identified gender or move away from sex segregated bathrooms altogether. As Jeannie Suk recently stated in The New Yorker: “The discomfort that some people, some sexual-assault survivors, in particular, feel at the idea of being in rest rooms with people with male sex organs, whatever their gender, is not easy to brush aside as bigotry. But having, in the past several years, directed the public toward heightened anxiety about campus sexual assault, the federal government now says that to carry that discomfort into bathrooms is illegitimate because it is discrimination. [emphasis mine]”

It seems that our culture’s response to this issue remains incoherent.

Body Integrity: Choice vs Design?

In my search for new topics I ran across the obscure “Body Integrity Identity Disorder,” or BIID.  This is described as a condition—if, indeed, it is a legitimate diagnosis—in which a person is troubled by the presence of a perfectly healthy body part, nominally a limb, and wants it amputated to restore a sense of personal wholeness.  One 2009 review argues that this is a rare but definable illness in which the sufferer makes a reasonable request for “treatment” that ought to be not only taken seriously, but honored, in select cases.

Briefly, the author of the paper in question, one Christopher Ryan, argues that a person with BIID is not necessarily psychotic (BIID is proposed as a diagnosis of exclusion, after the clinician has considered psychosis and other psychiatric conditions), and appears to be normal but has “clinically significant” impairment in personal functioning.  Central to the argument is the assertion that the person with putative BIID is not delusional.  Delusions rarely arise in otherwise normal people.  They are demonstrably false (e.g., “my relatives have been replaced by impostors”) while the BIID claim is inward and subjective (“my personal sense of integrity is violated”), and as such, is unassailable.  People with BIID keep it a secret, while delusional people never let you hear the end of it.  (Did I mention Area 51?)   In short, people with BIID are not crazy, and should not be so labeled.

BIID is not exactly presented as a major public health problem.  In his paper, Ryan refers to five reported or known cases.  Five.  I must say, with so few cases, I wonder whether they might not be 5 cases of mis-diagnosis rather than the emergence of a new disease that had not yet been formally recognized.  At the time of Ryan’s paper, no specific associated brain injury had been reported.  (I confess I have not attempted a search of the more recent literature.  This is a blog post, not a review article.)

Healthy limb amputation, Ryan argued, is not only ethically permissible but required in select cases on grounds of autonomy and net benefit to the patient.  Do you object?  On what grounds?  “Do no harm” begs the question—a risk-benefit assessment is required.  “It’s illegal?”  Shouldn’t be.  “We don’t know enough about it?”  We should collect the data; in fact, BIID should be a formally reportable condition with a data registry.  (Can we get that for abortion and oocyte donation, BTW?  Oh, forgive me [slapping my own wrist].)  “We should err on the side of caution?”  But nothing else works—notably not cognitive therapy.  (In my world, however, we don’t give up on an experimental drug if it fails the first 5 times it’s tried—we get more data before abandoning it.)  “There will be flood of requests for amputation?”  Hardly likely—if anything, a trickle, provided the diagnosis is applied with cautious medical judgment (emphasis mine), and the cost to society of making people disabled will be small if healthy limb amputation is limited to people with “genuine” (Ryan’s word, not mine) BIID.

Objecting clinicians have an obligation to refer, Ryan argues.  And the possibility of future replacement with an artificial limb is an opportunity for medical device development and treatment.

This is a serious topic and argument, but I must be candid—I have a hard time writing this post with a straight face.  A doctor has a better chance of seeing Sasquatch, and a much better chance of winning the lottery, than ever seeing a case of BIID.  And so most of us probably have the reaction I had, and ethicists like Arthur Caplan and my man Wesley Smith had (and that Ryan condemns):  a desire for healthy limb amputation is “crazy.”

But of course, in our autonomy-driven world, it’s anything but.  And it’s potentially the tip of an iceberg that includes, as Smith has revisited several times, not only cutting of healthy limbs but also cutting the spinal cord, making a seeing person blind, and, of course, the trendy case, transgenderism.  The logic underlying these cases is similar if not identical.

Individual autonomy must have its limits, if society is to establish and defend a point at which human life must be defended.  One argument is here (HT to Paige Cunningham for the link).  As that writer states, the rule of law requires “some concept of the objective value of human life” that is independent of individual autonomy.  It’s a point worth mulling over in the current context.  Ryan excludes from the diagnosis of BIID cases in which the person seeks amputation as a means of sexual gratification.  But how can he get away with that?  Why wouldn’t autonomy permit, in select cases, a sadomasochistic pact for mutilation or even murder?

Please forgive the indelicacy.  I will end with this:  the notion of BIID speaks directly to the nature of the human soul.  For if the soul is a real, metaphysical entity that encompasses all ultimate human capacities and directs the physical development of the individual (as I hold, in agreement with J.P. Moreland, as I understand him), then BIID reflects a sickness of the soul that needs healing.  But that requires God and His purpose.  But to say that each individual has sovereignty over his or her own physical identity the neo-Gnostic position that Robert George decried at last summer’s CBHD conference (available for purchase here):  the mind is all that matters.

Are we losing the concept of objective moral truth within the church?

I participated in two discussions in the past few weeks that have me concerned. The first was a discussion with the members of the Advisory Council that works with the Center for Ethics that I am involved with at Taylor University. We were discussing how we as Christians should live in a society that is rejecting Christian moral values more and more. One member of the group is a recent graduate who is now in graduate school, but most of us were old enough to be parents or possibly grandparents of current college students. We focused on how we could stay true to our moral convictions and communicate them to our society while showing love, grace and kindness to those with whom we disagree.

The second discussion was with about a dozen students, another professor, and myself. In light of the current presidential candidate dates, we were talking about how our moral convictions and those of candidates for political office should influence how we vote. Several students expressed the thought that disagreeing with a candidate on a significant moral issue would not be a reason to choose not to vote for that candidate. Some were saying that there are many issues and we need to decide how to balance those issues since it is rare that we can find a candidate who agrees with us on every issue. But that was not what the students whose thoughts concerned me the most were saying. They were saying that the fundamental Christian value is love and that it would be unloving to say that someone else’s moral convictions were wrong. Therefore, it would not be right to say that someone who supported same sex marriage or a pro-choice position on abortion was wrong and to make that a reason to consider not voting for that person even if you personally believed that same sex marriage and abortion violated your Christian values. The students saying this were not saying they had doubts about their Christian faith or even that they personally disagreed with a traditional biblical position on these issues, but that it was unloving to say that someone else’s moral position was wrong.

These students are young men and women who have been raised in the church and have chosen to attend a Christian university that takes a strong stand for traditional biblical values, but they do not have an understanding of the idea that moral statements are objective statements that are either true or false irrespective of what a person believes. They appear to have learned from our culture that moral values are a personal thing that should not be challenged by anyone else. They have not learned that God and his goodness are the foundation of all moral values and that God’s moral standards are objectively true whether someone believes them to be true or not. They do not seem to understand that to believe in moral values that are not true is dangerous and that it is not loving to allow someone we care for to do something dangerous. They do not understand what the group in the first discussion was trying to say. We should respond to those who reject Christian values with love, grace and kindness, but we need to help them understand that there are serious problems with pursuing life based on moral convictions that are wrong. Doing that is not unloving. We should do that because we love them.

There is a significant gap between the understanding of the mature Christians in the first discussion and the students in the second. The church and particularly those of us in Christian education have a big job ahead of us to try to bridge that gap.

Gnosticism and the transgender issue

Since June I have found myself coming back again and again to Robert George’s presentation at the CBHD summer conference. In it he talked about how our society has a concept of who we are as human beings that says we are non-bodily persons who inhabit or use non-personal bodies. This idea has its origins in Greek gnostic thought which was picked up by Descartes and modern western philosophy. It is significantly different from the Judeo-Christian concept that a human being is a unity of spirit and body. This difference helps me to understand why many in our society reach conclusions that are so radically different than those reached by those who have a Christian world view.

Currently the university where I work and teach is dealing with how we should respond to those who see themselves as having a gender that is different from their biological sex. As a Christian university we must decide whether those who live out that way of seeing themselves is in conflict with how we expect the members of our community to conduct themselves as an expression of our faith in God and a desire to live lives that reflect his truth and are growing in Christlikeness. We believe that a fundamental part of having a vital Christian community is having agreed upon moral standards by which we conduct ourselves as we live together. That allows us to foster the spiritual growth of our students and all of us in this community.

Because of that we need to determine whether living out a person’s transgender feelings is in conflict with our understanding of biblical moral truth. Robert George’s talk helps me to see that transgenderism is founded on the gnostic idea that the body is a non-personal entity that the person uses. If the real person is based on that person’s thoughts and feelings then a person’s subjective sense of the gender they should be is more real than the person’s physical biological sex. This is in conflict with the Christian understanding that we are created by God as a unity of spirit and body, and that the physical reality of our biological sex is more certain than the feelings of our fallen minds. This understanding of who we are means that the proper loving response to those who feel that they ought to belong to a gender that is different from their biological sex is to help that person understand why they might have those feelings and help them find ways to accept and thrive as the person God created them to be.

This also seems to me to be an appropriate way for Christians in medicine to approach this issue as well. It must be clear that this does not mean that we should condemn those who are convinced that they have a gender that is different from their biological sex. All of us are fallen and have things we do not see clearly. We should approach everyone with compassion, but compassion does not mean affirming something that is not true. We can lovingly help those who have a conflict between the gender they feel they belong to and the sex that they have been given understand that there is another way to see that conflict which can result in more complete healing.

“Our Family Secrets” Exposed — The Ethics of Whistleblowing

This week the Annals of Internal Medicine published an article so controversial they felt the need to publish an accompanying editorial, explaining their decision to publish the anonymous article.

The article, “Our Family Secrets” describes two experiences where a health care provider has acted inappropriately while patients were under anesthesia. The editorial describes the acts with poignant alarm: “The first incident reeked of misogyny and disrespect—the second reeked of all that plus heavy overtones of sexual assault and racism.”

Few things are as disturbing as the knowledge that things like this happen, perhaps more than we’re comfortable admitting, even if this is an extreme example. Treating patients with respect is a core value of health care, but “although we wish it were otherwise, most physicians at some point find themselves in the midst of situations where a colleague acts in a manner that is disrespectful to a patient.”

What is the right way to respond to this kind of behavior? What if the person acting inappropriately is your superior? Do you confront them immediately, as the anesthesiologist did? Do you report to their superiors? Do you try to ignore it? Do you join in, begrudgingly or otherwise? Do you write an essay for all the world to see?

While the actions of the individuals in the article are a topic for a lengthy discussion, the author’s decision to write the story, and the Annals of Internal Medicine‘s decision to publish it are an interesting conundrum altogether. The author ends his essay with, “I know this is my silence to break,” but is whistleblowing in this fashion the right way to handle these shameful secrets? It places serious negative connotations on the health care profession, including many innocent, respectful people. It might deter people from seeking the help they need, or make them wary of fully trusting or disclosing to their physicians or nurses. It could cause serious, palpable harm. The editorial discloses, “We all agreed that the piece was disgusting and scandalous and could damage the profession’s reputation. Some believed that this was reason not to publish the story. Others believed that it was precisely why we should publish it.”

In the end, they decided they would publish the story, but only anonymously. They decided that if this article gives just one person the courage to stand up to inappropriate behavior, then it is worth the backlash and potential harm. The editorial ends with this powerful statement, which I hope all will take to heart:

“We hope that medical educators and others will use this essay as a jumping-off point for discussions that explore the reasons why physicians sometimes behave badly and brainstorm strategies for handling these ugly situations in real time. By shining a light on this dark side of the profession, we emphasize to physicians young and old that this behavior is unacceptable—we should not only refrain from personally acting in such a manner but also call out our colleagues who do. We all need the strength to act like the anesthesiologist in this story and call our colleagues ‘assholes’ when that label is appropriate. We owe it to ourselves, to our profession, and especially to our patients.”

While we need to be careful about making sensitive information public, especially through mass media, the author of the article and the staff of the Annals of Internal Medicine do an eloquent job of handling a delicate situation with the grace, humility, and candor that necessitate discussion, change, and with any hope, healing and forgiveness.

The Hippocratic Oath and #TransHealthFail

Earlier this month, the Twittersphere erupted with a new hashtag that quickly reached trending status: #transhealthfail

Transgender people are sharing their negative experiences with health care using this hashtag. The experiences range from health care providers suggesting their patients get help elsewhere, even if their problems weren’t related to their sexuality, to blatantly making unprofessional comments about their sexual identity, even going so far as to call transgenderism “disgusting.”

These kinds of comments and experience are extremely common for transgendered people in their daily lives, and their experiences in health care are, unfortunately, not an exception to this rule. Physicians take the Hippocratic Oath, which includes a commitment to treat all people with respect and dignity. A common, modern version of this oath includes the phrase: “I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.”

This phrase suggests several important things:

1. Physicians have a special responsibility in our society, which should not be taken lightly. Philosopher John Rawls believes that a “persons’ moral and/or political obligations are dependent upon a contract or agreement among them to form the society in which they live.” Under this kind of theory, physicians need to act in such a way that is befitting to a person entrusted with a position of power over vulnerable people in need of their expertise.

2. Patients, regardless of whether or not you agree with their lifestyle or decision, are a physician’s fellow human beings. This means they are due the same respect and care that one would expect to receive for his- or herself.

3. Physicians have an obligation to all people. Those sound of mind and body, the infirm; rich, poor; young, old, and everything in between. Physicians must treat all people with respect, dignity, and care, regardless of the circumstances.

Health care workers are human, and therefore will make mistakes from time to time. However, they must make a conscious effort to educate themselves when it becomes apparent that there is a need. This is one of those times.

The Personhood Problem

This week, a New York judge dismissed a case seeking to free and grant personhood to two chimpanzees being used in studies by Stoney Brook University. Manhattan Supreme Court Justice Barbara Jaffe issued a thirty-three page document outlining the reasoning behind her decision. A higher court had ruled on a similar case last year, so she was bound to follow suite.

The Nonhuman Rights Project, who sought to free these chimps, made arguments for personhood based on their powers of cognition and “their similarity to humans in DNA composition, communication, and self-awareness.”

There is more at stake with these kinds of decision than the rights of nonhuman animals, however. The kinds of arguments used to grant personhood to nonhuman animals also run the risk of questioning and potentially even removing the status of personhood from some humans. If we are to follow these kinds of criterion for personhood, we risk alienating young children, the elderly, and the disabled from having personhood.

Animal rights and pro-choice activists often have a similar list of qualifications for personhood that, either intentionally or unintentionally, exclude some people from personhood. In her famous argument against granting personhood to fetuses, Marry Anne Warren cites five necessary conditions for personhood:

1. Consciousness

2. Reasoning

3. Self-Motivated Activity

4. The Capacity to Communicate

5. Self-Awareness

If a being fails to meet any of one these criteria, Warren argues, that being is not a person. While her argument was designed to prove that a fetus is not a person, it is also strikingly similar to the arguments used by the Nonhuman Rights Project. Additionally, if this logic is followed, not only are some animals persons, but some humans are not persons, and these groups are already the most vulnerable in our society, especially the elderly and the disabled.

As much as I sympathize for animals used in research and kept in poor conditions, I have a responsibility as a Christian to “Learn to do right; seek justice. Defend the oppressed. Take up the cause of the fatherless; plead the case of the widow,” (Isaiah 1:17 ESV).

How can I address injustices toward animals without promoting logic that excludes some people from personhood? Is it possible to balance these two causes, or must one fall in favour of the other?

Is Change in Abortion Legislation on the Rise?

The New York Times published an article last week about possible new legislation regarding abortion standards in the United States.

The House of Representatives voted 242-184 to ban most abortions after 20 weeks. The current Supreme Court ruling on fetal viability is currently 22-24 weeks after fertilization. While it is likely that this particular bill will be shot down in the Senate, it is nevertheless an important step in the conversation about abortion.

Two quotes from the article most accurately depict the ongoing struggle between those in favor of and against abortion:

 

  • “‘No matter how it is shouted down, or what distortions, deceptive what-ifs, distractions, diversions, gotchas, twisting of words, changing the subject or blatant falsehoods the abortion industry hurls at this bill and its supporters,’ said Representative Trent Franks, the Arizona Republican who introduced the measure, ‘this bill is a deeply sincere effort, beginning at their sixth month of pregnancy, to protect both mothers and their pain-capable unborn babies from the atrocity of late-term abortion on demand.'”

 

  • “‘Every woman has a constitutional right to make health care choices in the manner she sees fit, and everyone in America should see this cynical attempt to seize control from women for what it is,’ Ms. DeGette and Ms. Slaughter said in a statement on Tuesday.”

 

Notice that each quote of value-laden terminology—the first focuses on the fetus’s ability to feel pain, even going so far as to call the fetus a baby. The second quote, on the other hand, focuses on women’s rights and the notion of patriarchal control and manipulation. While there is still this much difficulty in establishing language that doesn’t automatically estrange one side or the other, it is unlikely that any real change in legislation is possible.

I do, however, find it encouraging that these difficulties have not rendered the issue moot and caused it fade from view. When an issue seems as insurmountable as this one, the easy thing would be to do one’s best to ignore it, but the only way for progress to become feasible is to continue in open discourse.

Feminism and Egg Donation

Two weeks ago, I wrote about the troubling lack of informed consent for egg donation. Many women are completely unaware of the risks and side effects of the procedure. But what seems to be the bigger, underlying problem is that there is a lack of regulation for and research about egg donation.

The lack of regulation for egg donation is alarming on multiple levels. On one hand, it runs along a thin line between altruistic endeavor and sale of a human being. Additionally, it allows for the exploitation of women in need. In fact, women in third world  and developing countries are especially susceptible to this kind of exploitation. Much of egg donation has been outsourced to foreign countries where things can be done cheaper, not very different from the trend seen in modern industry. Firstthings.com calls egg harvesting, “the newest form of human trafficking.”

While Europe has responded to these ethical concerns with the “European Parliament Resolution on the Trade in Human Egg Cells”, America is notably lacking any kind of regulation at all. Despite being one of the wealthiest and most well educated countries in the world, the United States has shown a complete disregard for an issue that is an affront to its ethos. As Clark and Lahl write in their article, “Egg Donors and Human Trafficking”,

“Vulnerable young women, trusting the medical establishment with their well-being, are being heavily recruited by means of deceptive advertisements and coerced with large sums of money in relation to their social-economic status. “

How can Americans fight for feminism and equal rights when we don’t hold institutions that exploit women accountable? How can we truly progress if we don’t recognize our failures and do what it takes to correct them? We can use the hashtag #HeForShe all we want, but until we take a stand for those who are most at risk, we will not truly be a society that stands for truth, justice, and liberty for all.