More on the pro-PAS rejoinder in the New England Journal of Medicine

Today, by way of agreement, I’d like to add my two cents to Steve Phillips’s post of July 19 about the recent NEJM article proposing to sanitize, as it were, physician-assisted suicide (PAS) by trying to spare physicians from providing lethal drugs.

[I should write about something unique, and relegate this to a comment on Steve’s post, but I have been working on a presentation for my church on end-of-life issues, so I’ve been dealing with this topic recently.]

First, the authors of the NEJM piece “spin” the Oregon Death With Dignity process a bit promotionally, in my view. They describe it without any of the cautionary concerns raised by, for example, the CMDA. Check out the “Standards 4 Life” tab on the CMDA website; the worries raised there are not included in the NEJM article’s description.

Second, the authors claim to have dispatched five of the six “primary” objections to PAS. Palliative care is better, they point out. (OK, but it can improve more.) Oregon is not dispatching the vulnerable; most PAS requestors are white, educated, and affluent. The number of requests (30-50 per year) is not increasing, and the eligibility is not being broadened, so they consider “slippery slope” arguments mooted. Nobody is getting coerced in Oregon. And sanctity of life, they say, is subjective, and a PAS option for some would not affect “those who object.”

And, (the sixth objection), given the large majority of physicians who object, the NEJM article proceeds in bad faith, by appearing to suggest a solution that respects physicians’ conscience: doctors just have to provide the diagnosis and prognosis of a terminal illness. A “central state or federal mechanism” (note the impersonal wording!) can do the rest. In fact, as Steve smelled out, they are circumventing doctors’ care for their patients.

Leon Kass cited three “dangers” to a “right to die” in his 2002 book Life, Liberty, and the Defense of Dignity. I think they still apply:

1) “A right in aid-to-dying will translate into an obligation to others to help kill.” In this case, the state becomes the euthanizer. “God forbid,” Kass said. Someone—someone anonymous to the person making the request—will have to provide this “help.” These people will be bureaucratic executioners. I can imagine someone making parallels to capital punishment here, but PAS would not be an example of the state wielding its just powers of retributive justice. Physicians would be pushed into complicity, as would be government employees, taxpayers, etc. And, by the way, if you think you are a right to be made dead, that does not mean you have a right to oblige me to help you.

2) There will be “no way to confine the practice to those who knowingly and freely request death.” Reassurances about Oregon are cold comfort. Prevailing trends toward limiting moral status based on active, realized capacities will drag us toward frank euthanasia, and we can predict pressures to make decisions “for” comatose people, or pressures on depressed or burdensome folks to send in the government paperwork.

3) “The medical profession’s devotion to heal and refusal to kill—its ethical center—will be permanently destroyed…here is yet another case where acceding to a putative personal right would wreak havoc on the common good.” Steve nailed this one in his post.

Space does not permit me to rehearse Kass’s arguments why the “right to die” is incoherent. Suffice to say that it is contradictory to suggest that the language of rights, which assumes life and choices, can support a “right to be made dead,” which obliterates both.

Most certainly, a PAS option for some would affect those who object. And sanctity of life is anything but subjective; rather, it is grounded in quite objective arguments about reality and assumptions necessary even to discuss right and wrong.

I had been thinking that PAS was not so much of a front-burner issue recently. The NEJM authors say “[m]omentum is building for assisted dying.” Is it, now? I am not so sure, but I am reminded not to doze off.

Suing FDA over Directed Sperm Donation?

I guess it’s modestly interesting…

You may have seen the recent news item that a woman, who wants to conceive using a directed sperm donation from a male acquaintance, is suing FDA, presumably, if the media reports are to be believed, because “the Agency” is preventing the donation from happening. She is quoted in some circles as saying that she does not want to be “forced to have intercourse” with the man. In others, it is said that she does not want to pay to have him tested for communicative diseases. It seems like the latter is probably closer to the real issue. At first, I thought she had a compelling argument. After a little digging, I don’t think so.

As I noted in my May 29 post on adult stem cells, FDA regulates human cellular and tissue-related products pretty closely. This includes requirements that “any establishment that performs one or more manufacturing steps” for these products register with FDA, list their products, and satisfy FDA that the steps they take to process the cells or tissues don’t do something to them that would increase the risk that they could harm a recipient of the product.

In the case of donated reproductive cells, FDA requires that establishments test donors of anonymous or directed (emphasis mine) sperm or eggs for several diseases: HIV (types 1 and 2), Hepatitis B and C, syphilis, gonorrhea, chlamydia, and, for sperm, viruses called CMV and HTLV (types I and II). At least some of this testing is subject to the qualification that it is required if the donor and recipient “are not sexually intimate partners.”

If establishments don’t comply, and FDA finds out, FDA may send them a “warning letter,” which is one step short of FDA showing up and padlocking their door and shutting them down. It seems like FDA issues such a warning letter to sperm/egg donation centers every month or two, usually for failure to do the testing.

So it seems to me that nobody is telling this woman she may not have a directed sperm donation from her acquaintance. The reasoning appears to be that, once a third party is involved in handling the sperm (or eggs, the same issues apply), that third party assumes responsibility for preventing the spread of sexually-transmitted disease in the process.

Note that a more elusive issue—whether the donor might have other genetic diseases that pose risks to the eventual offspring—is not raised in this case.

I don’t know for sure how this plaintiff will do in court, but on principle I don’t like her chances.

Of course, I and probably most readers of this blog would reject artificial insemination-donor (AID) overall, on moral grounds, so there would be no issue. And as I read the regs, the same restrictions may not apply in exactly the same way to artificial insemination-husband (AIH).

As I said, minimally interesting. Poorly reported in the press—but they needed a headline, I guess.

Trying to understand medical benefits and harms

I am at the annual meeting of the Drug Information Association (DIA), a group of drug development/clinical trial professionals, in Philadelphia. Among the sessions are discussions about how to get a more rigorous assessment of whether one medical treatment works better than another—called comparative effectiveness analysis (here, CEA)—and whether the risks of some things like new drugs are worth it (called risk-benefit or harm-benefit analysis). Both are of great interest, and involve challenging efforts that can be easily misunderstood in places like the general press. Some key points:

This is hard—the techniques are being worked out and involved sophisticated mathematical analysis to do things like weighting (as in, is a 50% chance that your migraines will get better in a few hours worth a 1% greater chance you’ll get a heart attack over the next 10 years? How relatively important are those two?), and sensitivity analysis (do we get the same results if the weightings, or the chances of different outcomes, change?).

You can get a different answer depending on who you ask—One great idea in benefit-harm analysis is to ask patients with a disease what they would prefer. Some studies work on that principle, by surveying patients. Patients tend to be more willing to take risks than doctors (“first, do no harm,” and by the way don’t get sued) or regulators (avoid the nasty Congressional inquiry and press coverage if someone decides you approved a risky drug). But both types of groups need to be approached.

The judgments are value-laden, so a single, precise mathematical answer will be elusive if not impossible, but the information gained can help inform reflection and decision-making. There will be a risk to conclude too much. But I bet that much enlightening information can be gleaned.

Techniques are not standard and so it’s hard to get reproduce findings. But every new “study” will be trumped by the press as definitive. Take your medical reporting with a grain of salt.

What you find depends on what you look for—which means that taking time to define the research question carefully is important. Also, once you find something, you tend to assume that you are right in future inquiries.

Note that none of this brings cost into the equation, yet. In fact, some of the work is funded by the ‘stimulus package’ and the ‘Affordable Care Act,” both of which prohibit using funds for cost-effectiveness analysis. That will come but is not the whole schmear.

This work will go forward, and provide a lot of useful data, I bet. There will also be a great risk that results will be overinterpreted, people will jump to conclusions, and there will be a great concern that decision-makers are doing too much with the results. Still, this work is to be followed, viewed soberly, and not overly feared.

“Search and Destroy” by Stealth?

Last week’s publication, “Noninvasive Whole-Genome Sequencing of a Human Fetus,” by Kitzman et.al. in Science Translational Medicine, does not represent a Rubicon-crossing so much as a next logical step. It raises the well-described ills of devaluing unborn human life and the “soft eugenics” of parents attempting freely to choose their children’s biological characteristics. These issues were promptly addressed by seasoned observers such as Wesley Smith and the New York Times’s Ross Douthat.

Your intrepid correspondent paid the $15 for the article online and must report that he’s technically over his head, but that it is clear that this is a tour-de-force made possible by rapid gene sequencing and serious math/computer power. It’s also crucial that, as it turns out, DNA fragments float free in the bloodstream, and that up to 10-13% of that in a pregnant mom’s blood comes from the baby in the womb. That means that all of mom’s genes can be sequenced from her blood cells, all of dad’s genes can be sequenced from DNA obtained from his saliva, and when the information obtained from sequencing the free-floating DNA in mom’s blood is combined with these, predictions can be made about whether the baby might be affected with any one of about 3000 single-gene diseases. Then, when the baby is born, baby’s DNA can be sequenced—and the prediction turns out to be 98% accurate. Um—wow.

It’s all subject to the usual biomedical yada-yadas—it’s expensive for the moment, it needs to be validated, it was on a single case (actually two, but the article focuses on one)—but with refinements it will be here to stay.

Until now, this kind of prenatal diagnosis has required an invasive procedure—for example, amniocentesis—in which a sample is taken directly from the womb during pregnancy, with risks to the developing baby (and to a lesser extent, to mom). Oldsters like me will recall the 1980’s when Dr. C. Everett Koop—Christian, staunch defender of the unborn, Surgeon General, and pediatric surgeon extraordinaire—declared amniocentesis a “search and destroy mission,” because results were typically used to inform an abortion decision, not to prepare for the care or treatment of the baby on the way. So it seems with this new technique. It looks like the main application is to identify individuals who will not be born because of some genetic disease they will have. That’s happening now with Down syndrome (a chromosomal, not a single-gene, condition), but the use can be broadened.

So why did these scientists do this in the first place? There seems to have been no purpose other than to facilitate the abortion decision. Maybe there are future cures that this very early diagnosis will someday facilitate, but it seems terribly hard to guess at that—or at the value of pre-natal as opposed to immediately post-natal diagnosis. Besides the well-known considerations about embryofetal moral status and reproductive autonomy, it seems to me that this is another example where it is increasingly important to question the ultimate goals of scientific inquiry. Knowledge may not always be an unqualified good and is less and less pursued for its own sake, it appears to me. Certainly this paper was solely about technology.

Where might it lead? Personally, I doubt some sort of state-mandated use. Rather, a “consumer-oriented” regime seems more likely in our society. And will people use it to predict more complex traits? That also seems far off—the interpretation of the data would be prohibitively complex and expensive. But those computers are getting more powerful….

We have another occasion to say, “We shall not.”

PS—I was due to post yesterday, but got behind. But thanks to Dr. Jerry Risser for a terrific post on veterinary vs medical covenants.

A Brief Update on Adult Stem Cells

Readers of The New York Times and other news outlets may have seen the May 17 announcement that Prochymal, an “adult” stem cell-related therapy to treat children with graft-versus-host disease, was approved in Canada by Health Canada (which is what they call their FDA up there). This treatment, which is made by a company called Osiris Therapeutics, is being tested for other medical conditions. Success does not appear to be uniform, which is to be expected. Most new medical treatments fail in at least some envisioned applications.
Graft-versus-host disease is a complication of transplantation—usually, as in this case, bone marrow transplant—in which immune-competent cells in the donated graft attack the tissues of the recipient. A little bit of this may be tolerable or even desirable, medically speaking, but too much is not pretty. The cells in Prochymal are so-called “mesenchymal” cells, derived from bone marrow. That is, they are in the marrow but are different from the cells, also in the marrow, that are destined to make mature blood cells. They are obtained from healthy adult bone marrow donors and are made into a treatment that can be prescribed “off the shelf,” so you don’t have to find new donors every time you want to use them. That is a neat technical feat.
Recall that somatic or “adult” stem cells are found in different tissues of the body and have different abilities to be transformed into some other kind of cell. They can’t make a whole individual. Readers of this blog will recognize them as the “good guys” of stem cell research and therapy.
This treatment is not yet approved in the U.S. I suppose it might be in the future. It seems to have followed a pretty standard scientific, ethical, and regulatory paradigm for the development of new drug and biologic treatments.
Most, but not all, adult stem cell treatment involves stem cells that specifically exist to form blood cells, for use as bone marrow transplants. These cells can come from a donor’s bone marrow, or they can be filtered out of the blood stream, where they circulate, or, increasingly, they come from umbilical cords. These historically have been used by medical centers as a procedure, but central banks are arising to procure, store, and provide them. Accordingly, the FDA is regulating them more and more as products like drugs.
There is ONE such adult stem cell product approved by the FDA—Hemacord, which consists of umbilical cord cells. There are late-stage trials seeking to establish that adult stem cells from bone marrow are useful in treating heart failure, for example, but to my knowledge final results are not yet available.
There are also a number of efforts to use people’s own adult stem cells for them—for example, in plastic surgery. FDA regulations require that this use be limited to cases where there is “minimal” manipulation of the cells, and the threshold for “minimal” is being fairly hotly disputed. If it is exceeded, FDA asserts substantial control over the efforts—at substantial effort and expense for the practitioners. I believe this is what much of the recent hubbub in Texas over adult stem cell treatments is about, but this blog is not big enough to delve deeply here.
I will say I think we should be careful about “scoreboards” of successes with adult vs embryonic stem cells. I find them misleading at best. If we are counting individual cases, that is not the same as approved therapies, and the number of individual successes is probably too low on the adult side without including the thousands of successful bone marrow transplants.
But in this context, the application of adult stem cells still appears to be expanding, and milestones like regulatory approvals should be noted by those interested in this area. And that, of course, is before we start talking about newer approaches, like iPSCs, to more “juvenile” stem cells.

Whoa, Robot

This week’s many events include these three: I watched the movie I, Robot for the umpty-umpth time; the FAA announced it will make it easier for domestic agencies (e.g., the police) to fly unmanned drones in the U.S.; and the Wall Street Journal ran this article by Dr. Jonathan Moreno from the University of Pennsylvania: “Robot Soldiers Will Be a Reality—and a Threat.”
Dr. Moreno—well-known to readers of this blog, through Heather Zeiger’s recent series of posts—worries deeply about the confluence of neuroscience and military technology. Some conceivable applications of bleeding-edge neuroscience threaten individual autonomy and public freedom, and write the questions of justice in large letters. As skeptics of human enhancement point out, what is to prevent some future enhanced being, humanoid or not, from taking over from us people? The “dual use” problem—that technologies may be used for good or ill—poses, at the extreme, existential risks to the human race, risks so great that they render “risk/benefit” analysis useless. (Dr. Moreno also made this last point in 2010, before the Presidential Commission for the Study of Bioethical Issues, regarding synthetic biology.)
Brain-machine interface technology, that could help paralyzed people control artificial limbs with only their thoughts, could not only be used to dominate an enhanced human soldier’s mind (as Heather pointed out), but also to permit humans to oversee weapons systems that are increasingly autonomous. Even now, automated systems (without the human brain interface, to be sure) are on duty in the Korean DMZ. But more sinister still is the prospect that experiments in quantum computing will lead to robotic warriors based on “whole brain emulation,” capable of making attack decisions that are out of the control of humans. They could be used to attack innocent people, ignoring the laws of war and honor.
It calls to mind the dystopian logical conclusion of I, Robot’s three laws, and Dr. Lanning’s musings that “free radicals” of code could spontaneously at least mimic the actions of the soul (like intention and self-awareness). The deep questions of philosophy of mind aside (for now), Dr. Moreno recommends lots of urgent international negotiations, of treaties, rules, laws, verification systems, human overrides, and the like. He also argues that “fully autonomous offensive lethal weapons should never be permitted.”
He’s right. And yet, for starters, we have a much more “nearfetched” problem at our door: if we allow unmanned surveillance drones flying around our communities, even in the name of only watching for the bad guys, we accept the use of an instrument of war over our people. Let’s start by banning that. It’s tempting, when we look at the places where the police seem outgunned, but we should advocate a ban on domestic drones, as well. (What’s that, guns are also an instrument of war? Not like drones, they’re not—anybody hunt deer with a drone?)
To get around to it, my points: 1) It is time now to stand, on a lot of fronts, and say “we shall not”; 2) Support Dr. Moreno’s negotiations, but realize that no set of rules will buy complete security, that bad actors will persist, and that the situation is so complex that useful rules will be elusive (how’s that Dodd-Frank regulation writing going?); 3) Aggressively defend the so-called “medical boundary”—technology should be used to heal disease, not do “extra-human” things. It’s not a bright line, but a useful concept nonetheless; 4) Accept—and here’s where it gets really hard—that there is such a thing as a normative, or essential, human nature, that establishes boundaries that ought never be violated (probably a position inaccessible in any meaningful way to the atheist/naturalist); and 5) Consider moving the “ban boundary” into the laboratory. In this case, why should we be doing experiments in quantum computing? What legitimate, God-honoring purposes are being served? The scientists should be pressed, hard, to articulate goals.
In the meantime, I wonder if I should take cover….

Pondering On the Way to the Biobank

Personalized medicine is all the rage these days. Much too big a waterfront to cover here, and, as is so often the case, one must be clear how one is defining “personalized medicine.” Often, the application is relatively straightforward; for example, does a person’s particular disease have a feature that makes him or her more likely to respond to a “targeted” new drug? (See Kalydeco for cystic fibrosis, or vemurafenib for melanoma, for two.) Efforts like this are not simple, but relatively uncomplicated.
But often, “personalized medicine” refers to a much more ambitious—and still distant—project: sifting through patterns in people’s entire genomes—all 30,000 or so genes—and discerning something akin to a “fingerprint” that can be used to predict the likelihood of getting a disease, preventing a disease, or responding to treatment. An article in the February 2012 issue of Nature Biotechnology looked at this: “Personal medicine—the new banking crisis” was its title.
It’s now possible to have a machine “read” the entire sequence of all of someone’s genes in a matter of hours for a cost of about $3000. $1000 or less is on the way. A number of major biobanks, consisting of non-profit, academic, and/or government entities worldwide, are collecting people’s samples (blood or other diseased or healthy tissue), and their genomes, in big databases that are analyzable (by really sophisticated computers), with the data sharable. One of the biggest, Généthon in Paris, has banked “300,000 samples from 80,000 people with 400 genetic disorders,” according to the aforementioned article. The first idea is to analyze large groups of people and genes; only later would, it is hoped, the results be able to guide treatment of individuals.
Practical issues include ensuring that the samples are actually usable, that the results from individual tests are reliable, and that there aren’t mixups of samples. But consider also:
• How will any audits/changes in the data be controlled? How can physicians or others trust the results?
• Establishing relevance to any clinical condition requires linking to medical records, electronically to be sure. Yet, reliable and efficient electronic medical records are hardly a reality, in general, as of today. Without the link, one has the specter of “the $1000 genome and the $1,000,000 interpretation.” And we don’t know what genome patterns, if any, may make a big difference in the health of individuals.
• Given that, there is great risk of individuals assuming they can have their healthcare guided by reading their genes, and there are people who would sell that idea to them, today. This is overselling; it’s not ready yet.
And some of the ethical issues are:
• Keeping the information confidential. Current privacy laws may not apply to genetic information. Also, the standard is to “de-identify” specimens so an individual cannot be associated with the genetic test results. But breaches of confidentiality can and do occur, and, eventually, some “re-identification” will be desired if results are to be used for a person’s medical care.
• What constitutes proper informed consent? How much must someone be told about the testing? And what limits must the researchers accept on future testing? In one case, a Native American tribe objected when specimens they thought were to be used for diabetes testing were later used to study genetics of mental illness ancestry, in violation of their values. What if a finding is made that might be clinically significant? Is it required, desirable, or even possible to inform someone of his or her individual result from a biobank’s testing? Is implied consent, or use of an “opt-out” approach, acceptable?
• What are the rules for sharing of specimens or data between groups of scientists? Or across national borders?
• How will discrimination be avoided?
• Should people retain some interest in any commercializable results from testing of their specimens?
Those are for starters. The Presidential Commission for the Study of Bioethical Issues (http://www.bioethics.gov/) is currently looking at the ethical ramifications of large scale human genome sequencing, and has asked for public comment up through May 25. Follow this link for the announcement: http://bioethics.gov/cms/node/676. If you wish to comment, you may do so at [email protected], or by mail to an address provided in the announcement.

Human Dignity on the Cancer Cost Curve

I apologize for the grandiose title…
If medical care simply must cost less than it does now, and if one is concerned that the goals and values of sick patients will be steamrollered by opinions of small groups of experts, where might things be headed? One view that the experts—i.e., doctors—may do some things to keep outstanding care affordable and in the best interest of the patient was proffered in May 2011 by Drs. Thomas Smith and Bruce Hillner, in their article, “Bending the Cost Curve in Cancer Care,” in the New England Journal of Medicine.
Drs. Smith and Hillner proposed that oncologists change their attitudes and practices in 10 ways. I condense and summarize them here; while all seem eminently reasonable to me on their face, some may raise tensions for human dignity, if that is understood from the perspective of patient choice. The condensed list:
1) Test cancer patients who are in remission less frequently for recurrence.
2) For most advanced cancers, use less chemotherapy—fewer cocktails of several drugs, at lower doses (rather than toxic doses with expensive other drugs to mitigate the toxic effects), stop giving chemotherapy after 3 rounds of failure, and don’t give chemotherapy to bedridden patients.
3) Integrate supportive care, of the sort usually identified with hospice in the last days of life, earlier on, with active treatment.
4) Pay doctors more for end-of-life conversations and other treatment planning, and reduce their financial incentives to overtreat. (Many cancer doctors make half of their incomes giving chemotherapy.)
5) Accept that cost-effective analysis and limits on availability/allocation of some treatments are here to stay.
6) Both doctors and patients should adopt more realistic expectations (we tend to be over-optimistic about how well active treatments will work).
7) Patients with [advanced] cancer should have end-of-life discussions with their doctors fairly early on in treatment.
Of this list, the first three are supported by a growing corpus of medical evidence. The next two are policy matters that raise ethical issues (doctors’ values, rationing). I think all 5 are coming, regardless of whether our government’s policies are more “Democrat” or “Republican” going forward. Policy questions in particular demand the broadest public discussion, as Dr. Dan Sulmasy and others have argued elsewhere.
The last two are the most poignant, because they sound sort of defeatist but they go to how we think about, and how much we cling to, our earthly lives. They demand intimate conversations in relationships characterized by trust and the covenantal role of the physician. Our medicines can often do much, but they can’t do everything. Of course, the Christian’s eternal hope provides critical context for these concerns.
Any affront to the dignity of “do everything” autonomy can be more than offset by the dignity of physicians wisely providing the best care they can to their patients, and guiding their patients through the necessary decisions. But those decisions must remain as individualized as possible. A list of broad principles does not distill into an easy formula or blanket rule. And setting appropriate expectations need not collapse into “rationing at the bedside.” Still, it may be critical to remember—to turn around Dr. Robert Orr’s statement—that “we never withhold care, but we may withhold treatment.”

Expertocracy, Paternalism, and “socializing” health care costs

If you haven’t already surmised, I confess it—the Wall Street Journal is my newspaper of record. (Apologies to the half of the country that prefers the New York Times.) Last Saturday’s WSJ review section carried a piece by Drs. Pamela Hartzband and Jerome Groopman of Harvard, decrying the “Rise of the Medical Expertocracy.” These two—particularly Dr. Groopman—have been writing thoughtfully about medicine for a while.
Their point: policy makers and citizens, regardless of whether they say they favor government or private-sector approaches, agree that all our health questions can and should be answered by the right panel of experts. It’s just a matter of whose experts we choose. Democrats have the Independent Payment Advisory Board, Republicans have insurance companies and their experts. Either way, the experts will “Figure out what works, and what doesn’t…pay for value and empower consumers…[and] no one will come between us and our doctors.”
Touche.́ I certainly have argued for so-called “best practices” in this blog. But these two doctors point out that expert opinions often conflict, outcomes cannot be guaranteed, rational patients do not make decisions primarily based on data, and “much of medicine still exists in a gray zone where there is not one right answer.” Moreover, “beyond safety protocols, there is scant evidence that [‘best practices’] improve our health.” What we are left with, they argue, is an objectionable new form of paternalism, when we should be emphasizing clinical decisions that are “based on a patient’s goals and values.”
These points are all well-taken and mostly correct. Where I would push back:
1) It seems to me that there IS a place for some clinical trial-driven “best practice” research, particularly regarding high-cost technologies of unproven or dubious value, where physicians have an (inappropriate) incentive to use them, either because entrepreneurship gets in the way or reimbursement rules are misplaced (see also the posts by Joe Gibes on Feb 17 and Steve Phillips on Feb 22);
2) It also seems to me that there is broad agreement that we should “socialize,” or share, at least the most egregious medical costs across large groups of people—whether through “public” or “private” options. We Americans are haggling over the most prudent and just way to do that. But what if the patient’s goals and values differ from others sharing the costs, not just regarding matters that most readers of this blog would consider moral concerns (e.g., paying for abortions), but also regarding questionable treatments? For example, I’m not so sure I’m willing to pay for someone else to receive Avastin for breast cancer, outside of a clinical trial. I don’t think it works. At some point, “We’re not paying for that” seems inevitable.
I suspect this new paternalism is here to stay. It may be soft, or not so soft. How much of it should we accept?

Post-Mortem Conception and Theology of the Body

This item from yesterday’s news: the courts are considering whether infants, born to a mother after having been conceived in vitro using the banked sperm of her late husband, qualify for federal survivor’s benefits.
The news report included this: More military men are banking sperm so that, in the event of their demise on the battlefield, their widows may start or enlarge their families after they are gone.
I can’t comment on the points of law here. But the whole situation seems amiss from the get-go.
“Repugnance” doesn’t apply, as I see it. It’s kind of easy to sympathize with the underlying sentiment. And this is not like T.S. Garp’s mom. Remember her? “I didn’t want his love, I only wanted his sperm.”
But I submit we should not embrace this practice, but gently challenge it. It deliberately brings children into the world who are, at least for a time, fatherless. And it forgets that children are properly begotten, borne, and raised by the living union of man and wife, and the fruitfulness of their intimacy, their oneness. To be sure, the ravages of war do great violence to this, and we should bemoan and, as much as we can, combat that violence. Still, it seems to me that there is not so much a limit to be observed here as there is a truth to be reaffirmed and celebrated.
That truth is that the procreative and unitive aspects of our sexuality must be held together—or, maybe, reunited—within the boundaries of living, biblical, covenant, heterosexual marriage. It is part of the created order that ought to be treated as a “given” of our lives, and not violated.
More generally, I think that this case reminds us that we must articulate an overall “theology of the body,” as noted by Paige Cunningham in the current issue of Dignitas. (Ooh, I’d better renew my CBHD dues!) I, a layman, and still a learner in bioethics, am not the best person to lay out the tenets of this theology. (So, help me out in the comments.) Some seem straightforward enough: All is not one; the Creator is metaphysically distinct from the creation. We are bodies and souls in union. (Gnosticism and naturalism are both pagan at heart.) Godly sexuality is to be enjoyed. Babies come from that joy, not just from “sperm and egg.” We don’t have children so that we can, somehow, “live on” in them.
Other tenets may be easier to say, but, for me anyway, harder to grasp at a deep, intuitive, emotional level. First, as important as human flourishing is, it is subordinate to eternal joy. I’ll speak for myself: I think I lead too quickly with human flourishing in some of my bioethics arguments. Maybe “What does it mean to flourish as a human being?” is not the best question. Maybe, “What does it mean to glorify God and fully enjoy Him?” should come first, and a bit louder.
Second—and I’m trying to get at this afresh in contemplating the cross—it’s both critical and hard fully to appreciate the incarnation. For one, do we believe in the supreme human excellence of Jesus in His humanity, as, for example, Dallas Willard pressed in The Divine Conspiracy? For another, how do we get at Jesus as “altogether lovely,” “our Beloved,” as the allegorical readers of the Song of Solomon, for example, encourage?
And finally, while I’m at it: We are not our DNA. I can’t emphasize this enough. We are more our souls, or at least our ensouled bodies, than our DNA. I urge readers of this blog to eschew sloppy popular phrases that seem to identify our DNA with our identity. For example, please don’t go around saying things like, “It’s in my DNA,” unless you are talking about a specific trait that really IS. And be careful about resting too heavily on genetic endowment in discussions of human nature.