Attending to Attention

It’s hard not to notice that the idea of “attention” is on a lot of people’s minds. In just one week my desk received a copy of The Hedgehog Review,, the monthly Turning Points Magazine & Devotional, and an e-mail message from a parent all dealing with this subject.

Since the advent of a DSM diagnoses involving deficits of attention (initially linked to hyperactivity), the number of children diagnosed has risen sharply, along with the number of prescriptions written to treat them. Many have carried this diagnosis, and treatment, well into adulthood. There are claims from opposing sides—that the claim that medical advancements have made produced an appropriate clarification and treatment of a previously undertreated problem, versus the claim that this a classic example of medicalization and promotion of a disease for the purpose of creating a market for a product.

Those interested in bioethics would appreciate the breadth and depth of analyses by the editors in the Summer 2014 edition of The Hedgehog Review, who call for a “metaphysics, aesthetics, and ethics of attention, as well as a political economy, and an ecology of attention.” In other words, something other than biochemical treatment. We can start with asking what we mean by “attention,” and therefore what would be a “disorder” of it? For example, attention can be viewed as active engagement with the surrounding world, as well as the dedicated focus on a particular subject, as in the inward contemplation required by academic studies. Invariably such discussion leads to our modern culture and its burgeoning distractions and alterations of values; from there it is no surprise that some would walk us back through the evolution of philosophical beliefs over the centuries, in combination with the advancements and effects of technology.

Emerging from all articles is a clear concern for the ethics of attention, with the recognition that a commercial and technologically saturated culture is not just providing options for our attention but demanding it. Thomas Pfau states that “to pay attention is not simply a matter of increasing, seemingly at will, one’s computational processes, but, first and foremost, to recognize and assent to what deserves our attention and why.” Pfau cites Aquinas as regarding attention as “indispensable to an education in the virtues.” With this argument we can see that the coarsening of our culture and the loss of attention are not simply coincident, but linked.

David Jeremiah in his August edition of Turning Points Magazine & Devotional also speaks to the ethics of attention, but is more specific in highlighting what we should and should not attend to. Indeed, if we are to declare there is an ethics of attention, it would be a hollow gesture to simply aver that attention or focus is good without then answering on what should we focus.

Such discussions are difficult to imagine in the environment of the clinical encounter, constrained as it is by time, abbreviated relationships, and various expectations. And as much as I would like to steer all patients away from medication, and have them and their families address the more profound and fundamental personal and social concerns, I also recognize how many patients and families I have seen who have managed to hold it together and succeed with the benefit of medications. But as a profession we ought to appreciate the depth of concern in our society as represented in these publications, and find ways to work along the lines of discussion to address the deeper problems in society, families, and patients.

The Fountain of Youth

 “Since by man came death, by man came also the resurrection of the dead. For as in Adam all die, even so in Christ shall all be made alive.”

Two weeks ago, family physician Joe Gibes wrote on the shaky medical footing of low testosterone treatment.  This week, Brian Williams reported on the NBC Nightly News that the FDA has issued warnings about thrombotic events associated with “Low T” treatment.  Dr. Bill Reilly, owner of an expanding chain of “Low T Centers” around the country and a user of testosterone treatment himself, says testosterone treatment is worth the risk.  According to Reilly:

“Once I got on testosterone, boy, it was just back like I was in college.”

At the conclusion of Dr. Nancy Snyderman’s story on Low T and Dr. Reilly’s testosterone centers, Dr. Reilly stated:

“You can age, but you don’t want to grow old as you age.”

I don’t understand that last statement.  I think part of aging is getting older.  Though it is hard for some Americans to imagine, aging, at one point in time, was thought to be accompanied by honor, as younger people looked to their elders as sources of wisdom.  Take the words of the book of Proverbs:

“Gray hair is a crown of glory; it is gained in a righteous life.” – Proverbs 16:31

Of course, today we would use hair-coloring long before “old age” and the proverb would be a moot point.  Gray hair would be a sign of a problem.  We would need a treatment for that.

Low T Tx is one of many maladies in American medicine due to our loss of our Christian context.  There is no need for every physician to be well-schooled in Christian theology, but when a culture becomes removed from its Christian background, well, then we really are left o our own devices (in a very literal sense).  Thus, aging, with its organic decay and immobility, is of no use to us and must be “treated” as a pathology.  What we really lack is the context of a resurrection.  It is completely normal to be dismayed at our own mortality.  However, within the context of a Resurrection we understand that God is good enough to even restore the decaying body.  In the words of the apostle Paul:

“But in fact Christ has been raised from the dead, the firstfruits of those who have fallen asleep.  For as by a man came death, by a man has come also the resurrection of the dead.  For as in Adam all die, so also in Christ shall all be made alive.  But each in his own order: Christ the firstfruits, then at his coming those who belong to Christ.  Then comes the end, when he delivers the kingdom to God the Father after destroying every rule and every authority and power.  For he must reign until he has put all his enemies under his feet.  The last enemy to be destroyed is death.  For ‘God has put all things in subjection under his feet.’”  — 1 Corinthians 15:20-27

Aging reminds us that death is real.  However, in Christ, the new Adam, there is hope of resurrection.



Germline Alteration and Defining “Just Research”

Yesterday’s post by Steve Phillips raises a central question for us in the “biotech century”:  are there some sorts of experiments that fundamentally ought not be done because of the potential they will be grossly misapplied by bad actors?  Steve cited research by Lord Robert Winston seeking to create genetically altered pigs—that seem, from the description in the press, to be what scientists call “transgenic” pigs—that carry a (relatively small) amount of human immune system DNA such that the pigs’ organs would not be recognized as foreign—and not rejected by—a human transplant recipient.  The press story states that Lord Winston worries that “countries like North Korea” could abuse the technology for “risky eugenics programmes.”

This kind of worry is not new (see: nuclear fission).  And since, as Solzhenitsyn reminded us, the “fault line” between good and evil runs through the individual human heart, we ought to fear malevolent “dual use” not only by the likes of terrorists, but also morally misguided applications by we who supposedly are enlightened.

So, the fundamental technology issue is invoked:  is every technique morally neutral, or are there some sorts of maneuvers we ought never attempt, out of “a presumption to forbear,” or some such thing?  When it assessed synthetic biology in 2010, the Presidential Commission for the Study of Bioethical Issues faced the question, and reasonably, but perhaps a bit tentatively (not that I could be bolder) recommended a mix of “responsible stewardship” and thoughtful, publicly-debated regulation, much as exists now for attempts at gene therapy.  More recently (and I am reading the offerings much too slowly), bioethicists writing from a secular perspective express doubts that defensible limits may be placed on synthetic biology by an appeal to “the natural” as something that ought not to be tampered with.  (“It’s not nice to fool Mother Nature,” as the old margarine ad said.)  At best, saying “hands off the natural order,” whether defined in religious, environmentalist, or, as it were, Darwinian terms, would need to be limited to “hands off human nature,” or some aspects thereof.

That there is an “untouchable” essential human nature seems intuitive to me and, I suppose, to many religious- (or not so religious, e.g., Leon Kass) conservative bioethicists, yet we must define what we are talking about.  As has been discussed in the past by another contributor to this blog, Dennis Hollinger made a noteworthy attempt in the Fall 2013 issue of Ethics & Medicine.  Rejecting the nature of medicine, aversion to eugenics, justice, and “multiple standards” as foundations for placing limits on biotechnologies, Hollinger proposed four aspects of human nature that ought never be touched:  male/female gender identity, the “ensouled” nature of the human body (i.e., attempting to separate the mind from the body), human finitude, and the one most relevant for the current discussion, the integrity or uniqueness of the human species.  With this last point, Hollinger sought to proscribe the creation (as has been attempted in the UK, which, last I looked, is not North Korea) of human/non-human hybrid embryos.  I rather favor his list, although I note that it requires a rather Aristotelian view of species, or “kinds,” of organisms—a perspective that I understand writers like Leon Kass and Robert George to adopt, but one that is not congenial to much of modern biology, and that sits uneasily with contemporary Christian thinkers, like William Hasker, who favor an “emergent” understanding of the human self over the “Thomistic essentialism” of J.P. Moreland and his devotees, like me.

Moreover, it does not seem that Hollinger would disapprove of Lord Winston’s work in principle.  Transgenic mice—with just one human gene introduced—are a commonplace in biomedical research, and transgenic pigs would seem to be incremental step, not a fundamental departure.  In any event, those of us who would adopt Hollinger’s perspective must define what we mean by inviolable human nature.  It’s not straightforward.

Another perspective that I believe is worth some thought comes from Nathan Adams’s contribution to the 2004 book, Human Dignity in the Biotech Century.  Appealing to natural law (space here does not permit addressing persistent objections to that approach to ethics), Adams attempted to define a “just research” theory, analogous to classical just war theory.  Paraphrasing, just research must have just ends, be carried out by just/proportional methods, be conducted by just means, be “declared” by a competent authority, have a reasonable chance of success, and be a last resort.   I’m not sure I would understand Adams’s theory exactly as he does, but it seems to me that, for biomedical research, “just ends” is largely determined by therapeutic intent (as opposed to other uses), “competent authority” is loaded (divine writ vs, or accompanied by, public debate?), “last resort” is eminently reasonable (if an approach is questionable, like embryonic stem cell therapy, try an alternative like somatic stem cells instead), and the other criteria are largely addressed, at least when human subjects are concerned, by the present regulatory/ethical regime of risk/benefit assessment, scientific validity, and informed consent.

There is much more to say, of course, and I am carrying on too long here.  Should Lord Winston—and we—be worried?  Of course.  Should he not do his experiments?  If I understand them correctly, I’m not so sure I would stop those.  If he’s making transgenic pigs, that might be “in bounds.”  But no one should try to create a “transgenic human,” and I would stop short of any heritable human alteration as well.  (Hence my recent posts on attempts to interdict mitochondrial disease.)  As I read the Nuffield Council, it looks like the UK is not too worried about heritable human gene (germline) alterations.  (Again, it’s 5,397 miles from London to Pyongyang.)  I think I also would rule out laboratory work to make multiple genetic alterations of multicellular organisms, or human protocells, or to define a minimal human genome.

But I’ve still got work to do to defend that.  Suggestions are welcome.

New method for genetic modification – genetic alteration of sperm

Germline genetic modification is a technique that some find intriguing and many find very concerning when its use is considered in humans. However there are uses of germline genetic modifications in animals that may impact humans in multiple ways. In an article in The Telegraph, British researcher Robert Winston talks about current research to develop animal organs (usually from pigs) that could be genetically modified to be acceptable to human immune systems and not be rejected. This has been done in animal models by genetically altering pigs so that a pig heart is not rejected when transplanted into a baboon. One of the problems with such genetic modification is that it requires the use of IVF and the genetic modification of the produced embryo which is a very difficult and inefficient procedure.

In an attempt to find a way to do this type of genetic modification more efficiently Winston has developed a process in mice by which the DNA of sperm can be altered and then the sperm used to artificially inseminate a mouse to produce genetically altered mice. Theoretically this technique would be an easier way to produce genetically modified pigs whose organs could then be used for transplant.

Several ethical issues arise from this. One is whether the goal of producing animals with organs that can be transplanted into humans is something we ought to do. Winston seems to think that this is an acceptable goal and is the stimulus to his research. His primary ethical concern is that the technique he is developing for use on animals could be used with people. Genetic alteration of sperm might be a relatively simple way to introduce genetic enhancements into human beings. Although he was not intending that use in developing this technique he has concerns about its use to genetically alter humans. There are significant concerns about the safety and permissibility of doing human germline modification and he feels those concerns would keep this technique from being used in humans in places such as Great Britain, but is concerned that there are some places and cultures (he mentions North Korea) where ethical concerns would not prevent attempts to do human germline enhancement.

This raises an interesting question. Should a researcher who is worried that a technique that is being developed for what he thinks is a good purpose be pursued when he recognizes a serious concern that the technique could be misused in ways that are wrong?

Low T, marketing, youth, and sex

Hormone replacement therapy is back in the news: not estrogen/progesterone for women, but testosterone for men.

There are some similarities between the two therapies. Each was/is heralded by claims for the amazing cures it would/will provide for a multitude of life’s ailments. Estrogen/progesterone was prescribed for legions of women with a lot of assumptions that it would do wonderful things like help dementia and cardiovascular disease, but without good data that it would actually provide much benefit (beyond helping hot flashes); testosterone is being prescribed for increasing numbers of men worldwide with a lot of assumptions that it will help things like low energy and “unwanted body changes,” but without good data that it provides much benefit (outside of specific deficiency states). Estrogen/progesterone was promoted to “treat” something that was traditionally thought of not as a disease, but as a “natural” part of aging (i.e., menopause). Testosterone is increasingly used to “treat” what is a “natural” part of aging (that is, the normal gradual decline in testosterone levels that occurs after about age 40).

Testosterone has been hyped by some as a fountain of youth, although it hasn’t been recommended for general consumption the way estrogen was — yet. However, aggressive marketing suggests that if you have a lack of energy, can’t play sports as well as you used to, or fall asleep after dinner, then testosterone may be the quick fix for these and other “unwanted body changes.” These symptoms cover, well, just about everybody past a certain age.

Testosterone’s rapidly growing popularity is driven by aggressive direct-to-consumer marketing (“Low T is a a pharmaceutical-company-recognised condition affecting millions of men with low testosterone, previously known as getting older” – Stephen Colbert), our culture’s obsession with youth, and our culture’s obsession with sex. In a medical climate that is driven increasingly by consumer demand, this is leading to increasing numbers of prescriptions for questionable indications, with as yet unknown potential harms. Testosterone is a useful medicine for men with specific deficiencies; physicians should resist prescribing it to satisfy the cultural bias that says that old age (or even middle age) is inherently an unhealthy state that needs treatment.

“The Power of Three”

That is the title of a news piece accessible at Nature’s website this week.  It refers to something that Steve Phillips and I posted on back in February; to wit, the potential for “three parent babies” resulting from the transfer of a nucleus (and its genetic material) from a diseased mother’s egg cell into the enucleated egg from a healthy donor.  (I am skipping important technical nuances with that description; see the Nature article for at least a partial description.) The disease(s) in view are mitochondrial diseases, rare but devastating disorders resulting from abnormal mitochondrial genes, of which there are all of 37, compared with on the order of about 20,500 human genes overall.   Human sperm transmit no mitochondria to offspring, so mitochondrial diseases are inherited from the mother.

The Nature piece, while far from complete, is a pretty good introductory discussion of the work for the general reader.  It briefly addresses some, but not all, of the implications.  The subtitle says that this work is “on the verge of clinical use” in the hope that women with mitochondrial diseases might be able to bear unaffected offspring.

I count at least 10 ethical issues raised by this work.  There may be more.  Steve and I touched on several in February, but the Nature article offers the occasion to try to list them briefly.  I don’t pretend the following list is complete, and space prevents me from trying to address them.   Also, there was an excellent piece last year in CBHD’s Dignitas, which I cannot lay hands on, and could not do justice to, here, in any event.

First is the question of risks to any immediate offspring.   It is not clear that the egg modification process will eliminate diseased mitochondria, or avoid further complications, including, conceivably (apparently based on work in mice and fruit flies) other genetic or general disorders not directly related to the mitochondrial defects.  As Steve and I commented in February, these risks are far from fully understood.

Second is the question of informed consent.  The unborn, much less the yet-to-be-conceived or yet-to-be-implanted, obviously can’t provide informed consent.  The intended mother would have to do that.  That’s not necessarily outside the pale.  Presumably a child otherwise destined to be afflicted with these disorders would be willing to take considerable risks to try to avoid them, and in any event existing regulations allow more-than-minimal risk research in pediatric populations if there is a sufficient prospect of direct benefit to the subjects.

Third is the question of whether there would be any risk of inherited disorders to the second generation—the offspring of the “treated” child.  Researchers in the US have followed two generations of monkeys after the sort of nuclear DNA transfer envisioned, and report they appear normal.  Some scientists would want to see many more generations.

Fourth is the possible strategy of sex-selective abortion to try to prevent the concern raised by the third issue.  One presumably would want to have only boys born of these procedures, to try to interdict any subsequent maternal transmission.  This assumes that the boys’ genomes are not adversely affected in the process.

Fifth is the practical fact that, to perfect the nuclear transfer technique, it would be considered advisable to do substantial practice with human eggs and sperm—i.e., create human embryos solely for research purposes, and of necessity subsequently destroy them.

Sixth is the commodification issue.  The eggs developed would be considered a form of cellular therapy, and be subject to strict manufacturing controls.  Presumably each case would be unique, so that buying and selling would be limited to compensation of the healthy egg donor.

Seventh is a form of the “slippery slope” worry—that the technique is broadened to become a treatment for infertility (already actively contemplated).  This is a concern in that it further commodifies reproductive medicine, and that it portends other ambitious extensions of the genetic modification of  humans.

Eighth, and related, are the broader twin concerns of confusions about parentage, and the wisdom of opening the door to introducing heritable changes on purpose into humans.  There is both the more consequentialist perspective on this—do we know what we are doing?—and also the concern that choices about introducing the technician so much more intimately into the outcomes of reproductive choices.

Ninth is the fact that all this is coming with relatively little discussion in the general public.

Tenth is a type of justice issue—this won’t be cheap.  Why this and not some other use of our resources?

Now, a difference of 37 mitochondrial genes is not going to make someone wonder who his mother really is.  Perhaps this would be one thing if we could be assured that we can establish a narrow scope and firm boundaries around this work, in the name of observing the “therapeutic boundary.”  But experience shows that such boundaries do not hold.

“Faking” Life?

Synthetic biology—loosely defined as the intersection of engineering and biology—is a burgeoning field with the potential to create or alter “non-naturally” occurring organisms using basic biomolecules, or similar molecules not found in living things as we encounter them.  A few years ago, Dr. Craig Venter’s group in San Diego synthesized the entire DNA of one species of mycobacterium on a lab bench, added some identifier sequences, and inserted this DNA into the cytoplasm of a mycobacterium of a different, related species, and saw that the new DNA changed the recipient’s phenotype to that of the new DNA’s species.

Today comes the announcement that a different group in San Diego has altered the DNA of E.coli to include two new nucleotides, gene-code “letters,” other than the five that are naturally-occurring nucleic acids.  (There are four in DNA, three of which are shared by RNA while the fourth in RNA is different.)  Venter’s group recently announced an initiative to create a type of transgenic pigs, altering them so that their lungs could be harvested for transplant into people but, it is hoped, not be rejected by the recipient’s immune system.  The drug company Sanofi recently started large scale of production of arteminisin, a plant product that is effective to treat malaria, in a yeast that has been re-engineered to make the drug from sugar.  That’s a breakthrough: arteminisin can’t be readily made by standard chemistry, and has to be isolated from plants, and malaria remains a serious worldwide problem.

This week’s issue of Nature is devoted to future directions for “synbio,” which is still getting its sea legs.  We need forward-thinking regulation, better communication among scientists from different disciplines, and a re-think of biotechnology patents (including, perhaps, scrapping them in favor of open-source efforts), the writers say.

Wild things have been written.  Did Dr. Venter “create life,” or just manipulate it, albeit brilliantly?  (My impression is that commentators generally think the latter, as I do.)  What extreme applications might we imagine, although they are far, far away from being technically approachable?  What ethical issues are raised, and how should we regulate the field?

In 2010, the Presidential Commission for the Study of Bioethical Issues, given a few short months by President Obama to report on “synbio” after the Venter mycobacteria report, did an admirable job getting its arms around a first-pass assessment of the broad ethical issues.  As part of that work, ethicists from Johns Hopkins commented that responses to breakthrough biotechnologies cover a spectrum, from “proactive” (enthusiastic about prospects) to “precautionary” (worried about abuses); applications may be considered anywhere from “way cool” to “way gross.”

Much of the work, such as the examples cited above, appear to be small steps that invoke, and are reasonably governed by, existing regulations and precautions that address genetic engineering.  (To be sure, the range of ethical issues invoked can be much broader; the Guardian pointed out that Sanofi might put lots of arteminisin farmers out of business, for example.)  The new work on E.coli will mainly affect a range of drug discovery and development efforts, although applications in forensics, for one, are also envisioned.

But grasping the implications of synthetic biology is keeping, and will keep, lots of people busy for a while.  On the one hand, we don’t need to worry about “aliens taking over Philadelphia” anytime soon, as Dr. Arthur Kaplan was reported as saying.  On the other hand, Michael Kalichman of UC San Diego said things might be more challenging “if the researchers were able to produce animals” with the new synthetic nucleotides.

The broad question seems to be, what’s “natural,” and how should we approach it?  If Mother Nature got a bit upset about margarine (remember those TV ads?), what sort of boundaries should we consider around synbio?  The categories of ethical issues are similar, but, as the editors of a recent book about the ethics of synthetic biology point out, they are raised in new ways, with a twist.  Matters for future posts…

More on this week’s FDA meeting about “3-parent babies”

I choose the provocative title to mirror the sort of headlines that were written this week about the FDA’s two-day meeting of its Cellular, Tissue, and Gene Therapies Advisory Committee.  Steve Phillips addressed this meeting quite well in his post yesterday.  I would just expand on that a bit here.

As with all FDA Advisory Committee meetings, materials are made available to the general public, in this case, here.  The first day was dedicated to the topic Steve identified:  “oocyte modification in assisted reproduction for the prevention of transmission of mitochondrial disease.”  Steve’s post provided a nice shorthand for what is intended: modifying the egg of a woman afflicted with a (rare, often serious or life threatening) disease attributable to mutations in mitochondrial DNA.  Said egg would receive “normal” mitochondria from a second woman’s egg cell.  The modified egg would then be fertilized by IVF.  At least, that is the most likely technique that appears to be in view.  Some approaches would take nuclei, or pro-nuclei, from a fertilized egg, constituting the deliberate destruction of an embryo.

A baby born of such a manipulation would indeed carry genes from three parents—two mothers and one father.  I doubt how much this would confuse the baby’s parentage; there are only 37 mitochondrial genes, and the bulk of the baby’s genetic endowment would come from two parents.  Still, any change would in principle be heritable—if the baby is a girl, that is.  Mitochondrial diseases are maternally inherited; fathers do not transmit mitochondria through their sperm.  Even so, this would be a momentous sort of step to take.

But, as Steve pointed out, the more immediate issues relate to risks to the child, and possibly to subsequent generations, and how one could meaningfully obtain informed consent.  A commenter pointed out that it is difficult to envision justifying these oocyte modifications as some sort of emergency therapy, so the necessary IRB meetings would be lively indeed.

Steve’s post barely covers the half of it.  I found the FDA briefing document on the subject harrowing indeed.  Although there are only a few mitochondrial genes, the mix of mutations is variable, as is the number of mitochondria that might be transferred, or that might be retained in cells of different types.  There appear on my read to be no good animal models.  There is no good way to predict the likelihood or severity of disease from analysis of the mutations of mitochondrial DNA, and preimplantation or prenatal diagnostic methods aren’t very good.   Potential risks to women undergoing the process seem relatively modest; they might not get pregnant.  Risks to the potential children are another matter:

“Potential risks to [the] children could include: 1) mitochondrial disease (particularly in women with mitochondrial disease), as a result of carryover of abnormal mitochondria and heteroplasmy; 2) disorders due to nuclear-mitochondrial incompatibility; 3) disorders related to aberrant epigenetic modifications; 4) birth defects and other disorders associated with the specific mitochondrial manipulation technology procedure; and 5) toxicities of reagents used in mitochondrial manipulation technologies. There may be additional risks that are difficult to predict because of limitations in current knowledge.”

And THAT still doesn’t do justice to the FDA’s briefing document, which makes it clear to me that they, at least, do not have a handle on what the risks are.  Keep in mind that, per the Belmont report, “relevant risks should be appropriately arrayed” in a research consent document.

(Oh, I almost forgot—one way to limit the risk of a child being born and passing mitochondrial disease to the NEXT generation is sex selection—bringing only boys, not girls, to term as a result of this oocyte manipulation.  Recall:  the diseases in question are maternally transmitted.)

This work is not ready for humans, even if it is regulated to limit its use to cases of known, severe mitochondrial disease.  Now, I am not schooled in the science, and I will watch for the meeting transcript from FDA to see if the Advisory Committee members were able to provide meaningful assessments of the risks.  But I’d want to see much more definition of the risks to consider human applications.  Even then, adoption would be a clearly preferable alternative from an ethical perspective.

But that of course gets at the issue of reproductive freedom, which is why we won’t see this subject go away.  Eventually someone will try it.  Such was the case with IVF in the 1970’s: Paul Ramsey objected on the grounds of risks to the children to be born, but then Louise Brown was born, and everything seemed OK, and many IVF babies, apparently healthy (pending long-term follow up; 1978 was only 36 years ago) have been born since.

It is noteworthy that the FDA’s briefing document contemplates oocyte mitochondrial manipulation not just for mitochondrial genetic disease, but also as a potential treatment for infertility.  That looks to be clearly beyond the pale here.  But the fact that it is included raises two further points:

  1. If this work proceeds for the purpose of allowing a seriously ill woman to conceive a genetically related, unaffected child, and that is perceived to be within the “therapeutic boundary,” it is probably only a matter of time before the boundaries are moved and the technique is used to support broad reproductive choice.  In that case, issues of heritable genetic changes will come much more to the fore than they may be at present.
  2. Oocyte manipulation becomes embroiled in the language of manufacturing; indeed, FDA’s briefing document discusses the need for “manufacturing controls.”  This is not all that surprising; the FDA is approaching oocyte manipulation as a form of gene therapy, about which it tends to apply drug development paradigms, ill-suited though they may be.  (See the separate topic of the second day of the FDA’s meeting—a guidance document addressing initial clinical trials of cellular or gene therapy.)

Similar work has been discussed in the U.K. recently; on April 23, 2013 I wrote about it on this blog, arguing that it too fundamentally alters core aspects of human nature and procreation that ought not be tampered with, whether because humans are in the image of God, or autonomous agents who at a basic level “ought not be disposed with,” or, at least, by virtue of a sort of “precautionary principle” that imposes a “presumption to forbear.”   The Nuffield Council in the UK was rather less concerned about the radical nature of what was being contemplated, endorsing oocyte manipulation as long as it’s safe.  Which is anything but clear at present.

But again, that was Ramsey’s other objection to IVF—that, like artificial insemination (donor), it fundamentally severed the procreative and unitive aspects of human sexuality.

The givenness of human nature

In his article in the Fall 2013 issue of Ethics and Medicine, Dennis Hollinger writes about how a Christian understanding of human nature impacts how we understand the limits that biotechnology needs to stay within to avoid changing things about humanity that should not be changed and how we understand what are the essential features of humans that ought to be preserved. He suggests that a Christian anthropology says that we should preserve the integrity and uniqueness of the human species, accept and not try to escape our finitude, maintain the unity of material and non-material dimensions of human beings as embodied souls, and respect the dual creation of human beings as male and female. All of these aspects of humanity are presented as “features of human nature that are divine givens that ought to be acknowledged and guarded.”

Hollinger is asserting that there is a givenness of human nature that we can understand theologically. It is essential in understanding what the limits of biotechnology ought to be. However, the idea of givenness is the key in this. One definition of the word givenness is the quality of being granted as a supposition or acknowledged. But the idea that there is a givenness of human nature is not a given in contemporary thought. Many who advocate relatively unlimited use of biotechnology and desire the transformation of human beings into a post human or transhuman state start with a position of philosophic naturalism and see human nature as the malleable result of unguided evolution. As Hollinger states, if one believes that there is no human nature that is normative or given then there is no need to be concerned about what should be preserved and not altered.

We need to recognize that a robust understanding of who we are as human beings is essential to bioethics and requires a solid foundation in the understanding that we are indeed created and have a nature given to us by our creator. Without that foundation all ethics is adrift. While we ought to be able to understand that we are created by looking at creation and can build some foundation from what God has generally revealed to all humanity in what he has made, it is through his written revelation that we can best understand who we are and what the nature of human beings is that we should shudder to alter.

My thanks to Dr. Hollinger for so effectively expressing an understanding of what those divine givens of human nature are that we need to preserve.

Erasing Inequality?

It is 2014 and, heaven help us, it is another election year in America. The talking points are already taking shape in our own political Yugoslavia, where dialogue was long ago supplanted by lecturing. On the right, one cannot hiccup without the word “Obamacare” coming out. Comparisons to the Hindenburg and Titanic are considered too tame; at least the former made it across the Atlantic and the latter had a few lovely days at sea. It has been intriguing to me that this blog, with contributors of strong opinion and willingness to express such, has left untouched commentary on the October 2013 rollout of the Affordable Care Act (ACA for short; “Obamacare “ as a term has gone from pejorative to badge of honor to pejorative again, and “ACA” is quicker to type, so thus it is…). I do wonder if, among its supporters and detractors alike, the difficult launch of the ACA has created some sense of grief, where the laudable aims of medicine to help all who suffer, and where there should be no affirmation that “everything is just fine the way it is,” should be considered acceptable. If this reform fails, perhaps we will never get any kind of reform. I won’t put words in the mouths of my blogging colleagues, but there has to be, at some humanitarian level, a bid of sadness at the initial difficulties of the ACA for those at the margins of society. On the right, I think it legitimate that there needs to be some expression of that, even within a firm critique of the legislation itself.

On the left, that all-American response to adversity—change the subject—has brought us to the “Message of 2014: Economic Inequality Must Not Stand.” This is, to some degree, laudable: recessions tend to ensure that winners win big and losers lose badly. Jesus told us that the poor would always be with us, but he didn’t seem especially happy about that whenever he encountered poverty. A sorrow about poverty is not the exclusive domain of a single political ideology, though how to deal with it varies greatly between the two American political parties. Solutions abound…just today came a piece by a former Bush Press Secretary, Ari Fleischer (can’t get the hyperlink to work, just Google it), about the social roots of economic inequality. At least we are all talking about it…

But is economic inequality sufficient as an ethical imperative? It seems there are lots of other kinds of inequality that should have principles of distributive justice applied as well. There is a thought that economic inequality is often a product of the “lucky versus the unlucky.” Some have advantages, things that allow them to win at life’s financial lottery. Others hold pieces of paper with losing lottery numbers and work on to beat the odds next time. I have not spent long periods of time studying economics, but it seems that there are a lot of lucky and unlucky people out there, too, beyond those who play the lottery for money.  My athletic prowess is revealed with many a “came in just before the guy with a heart attack” finishes in 5K races. Perhaps (and believably) I am not well-trained, but maybe I’m just not lucky to be gifted as an athlete.  But it would sure be great to be the top finisher in my age group!

Lots of other examples abound. Some seem to come down to the lottery of good fortune, or abundant blessing for the Calvinists out there. An advocate of the ACA, MIT’s Jonathan Gruber, sent the conservative blogosphere into hysterics this past fall when he declared that “genetic lottery winners” have paid “artificially low” insurance rates up until the advent of the ACA, where the playing field would now be leveled. There is more than a kernel of truth to that—it has genuinely paid to be healthy. But is that itself a form of inequality, a distributive injustice? Much can be said about what a social contract should include—what provides for the majority who didn’t “win the lottery,” and what means should exist to allow them to flourish. But is genetic fairness even a good thing?

Intellectually, economic injustice should mean that the many that are economically disadvantaged are not made “less poor” or the well-off made “less rich.” Each should make marked strides toward the middle, with the result that many get much richer and few get slightly poorer. In the perception of most, though, and with only a passing glance at the claims of the rich who are to be “soaked,” the standard becomes one that all should consider themselves rich. It is the mark of the human heart to find that no level of riches is completely satisfying, and so “good enough” is, alas, not good enough.

Does that perception apply to those who are not winners in the genetic lottery? If so, that means that there is an ethical imperative to be as close as possible to the best and brightest. Fortunately, we think, technology when applied to biology can do what economics cannot and even the playing field without the “genetic winners” giving up much more than their exclusivity. We all can be the best! Here there is more than a passing dalliance with eugenics, all in the name of equality.

I am an advocate of care for the poor, for helping those who are suffering economically, whether from mistakes they have made or through no fault of their own. Justice and grace are about that. But I know that humans have sought to be better than they are, to reach greater heights, and that life in a fallen world cannot erase the inequalities that arise as a natural phenomenon. So when we look at a more even playing field, in “economic inequality” or in human health and flourishing, have we really considered what most people find that to be, and whether erasing inequality in all its forms is a worthy objective for us to pursue?