Part VII Christian Bioethics

Part VII
Christian Bioethics

Shaping Human Life at the Molecular Level

JAMES C. PETERSON

The Gospel of John says that on at least one occasion Jesus turned water instantly into the best wine at a wedding feast (John 2:1–10). Now that is molecular enhancement. Jesus is also described as a builder in his hometown until about the age of 30, hewing the stone and wood of the natural world for his neighbors (Mark 6:1–3). Such shaping of the natural world to service was one expression of Jesus’ teaching to love God and neighbor. The world is God’s, and human beings have a special part in it. In the opening of Genesis the first humans live in a garden, not a wilderness. A garden requires tending (more roses or more aphids?) and the first human beings were directed to do so (Gen. 2:15). They were responsible to God to make decisions so that both they and the garden might flourish. Such stewardship gives a context for issues of ecology and the environment addressed in Chapter 35 of this volume. Chapter 33 considers responsibility for human life at the embryonic level. This chapter focuses on God-given stewardship of the human body that naturally includes genetics. The current practice of genetic testing will receive particular attention.

Body Matters

The human body matters in the Christian tradition. It is not a kind of prison for the soul as Plato thought. It is not to be disdained as with the Manicheans. It is part of God’s good and gracious provision. When the Apostle Paul writes of subduing the flesh (Rom. 8:1–14), he is not rejecting the materiality of the human body, rather he is referring to the harmful habits that we often build up in how we use our bodies. Our bodies are where we have the most opportunity to decide, and they come to embody our decisions. I can choose what I look at with my eyes, where I go with my feet, what I touch with my hands. Unless there are immediately disastrous results each choice tends to reinforce seeing and acting in that way again as the patterns become embedded in our muscle memory and neural net. Habits become part of our bodies. This has important implications for Christian spirituality and discipleship. As the primary locus of my own decisions, the body is where I develop momentum toward God or away from God. It is also where I can learn to love my neighbors as myself by seeing and providing for their needs, or to turn away from them. This eventually constitutive orientation toward God and others is so important for the follower of Christ that Jesus describes a great separation on the last day between those people who are his and those who are not. Those who are his can be recognized by how they are caring for their neighbors, bringing food to the hungry, water to the thirsty, visiting those who are sick or in prison (Matt. 25:31–46). To be clear, these body actions to care for the embodied needs of others are not described as ways of earning one’s way into God’s family, but are characteristic of those who by grace are part of God’s family (Eph. 2:1–10).

The human body plays a pivotal role in human life and purpose. As human beings we are deeply physical beings living at multiple levels (Green 2008). Whatever happens at one level has ripple effects for the other levels of human life. When the body is tired the soul finds it hard to pray. Further, the human body is so intricately complex that it is a wonder that it works at all. The stakes are high in a body vulnerable to disruption. A small change at a strategic point can wreak havoc. For example, a change in one base pair out of 3 billion in a person’s DNA, from a C to a T, might convert a glutamine codon (CAG) to a STOP codon (TAG). The result is a loss of the intended protein and its function. The implications can be as lethal as cystic fibrosis. A primary task for being human is to do what we can to maintain our bodies, restore them when they lose function, and to develop them when possible. Just to maintain the blood that courses through the veins of one person, each day the spleen destroys about 200 billion worn-out red blood cells, and bone marrow replaces them with 200 billion new red blood cells. If that system starts to break down, say by a disease that causes the kidneys not to make enough erythropoietin to trigger adequate red blood-cell formation, medical care makes every effort to restore the kidneys’ function. If we could intervene to keep a person’s blood replacement going before the system broke down, say with a vaccine that enhanced the immune system to protect the person from developing the kidney disease in the first place, such would be most welcome. We should sustain, restore, and develop our bodies where we can. Some people are genetically predisposed to lose bone mass as they age, facing the crippling of osteoporosis. We encourage the consumption of calcium and weight-bearing exercise to maintain their present bone mass. If a bone snaps, we realign it in its proper place to encourage it to knit back together. If, as often occurs, the body rejoins the bone at that point so that it is stronger than it was before, we are pleased. We do and should maintain, restore, and improve our bodies.

How we find our bodies at a given point is not a God-given standard that we are prohibited from changing (Albertson 2010). It is appropriate to intervene. We should brush our teeth. If they are ignored they will go away. Further when a tooth develops a cavity, it is right to fill it to save the tooth. It is even better to treat teeth with fluoride to strengthen the enamel beyond its natural ability so that no cavities develop in the first place. Maintain, restore, and improve. When a child is born with a cleft palate, there is no debate whether we should do surgery so that the child can eat and speak. If we could do a kind of genetic micro-surgery so that the roof of the child’s mouth grew together from the beginning without later cutting and stitches for the baby and her future children, would that not be better? In yet other words: sustain, repair, and develop.

Now the opening words of Genesis are “In the beginning God created the heavens and the earth.” This affirmation is at the start of the Apostles’ Creed as well: “We believe in God the Father, maker of heaven and earth.” That God created the world is sometimes confused with the idea that creation as we experience it now is God’s perfect intent for creation forever. This is deeply mistaken in at least two ways. First, the major Christian traditions agree that God has revealed a plan ultimately to transform his people from what we are now. Paul writes of the perishable transformed to the imperishable, a new form of the body suitable to live with God forever (1 Cor. 15:42–44). The Apostle John writes of the old earth and heaven passing away and a new heaven and earth given by God (Rev. 21:1). Some traditions emphasize continuity in this change between the present creation and the one to come (Volf 2001, 99–102), but it is still held in common that what is now is not what will always be. Change is promised.

Second, human life is characterized by misplaced priorities that the tradition identifies as sin. When human beings prioritize anything over the one true God they end up harming themselves and each other. Augustine wrote in the fourth century of our era that human beings were created right with God and one another, but lost this blessed state by their poor choices. Later, in the seventeenth century, Milton would describe this condition as a paradise lost. In contrast, St Irenaeus wrote before Augustine that human beings did not have initial perfection so much as a chance at developing (Irenaeus, book 4, chapter 11). Tragically, they turned from their potential to grow toward God and in God’s service to dissolution and grief, instead. What both Augustine and Irenaeus see is that human beings do not currently live as we could. Paul wrote of the present creation groaning as if in childbirth to be liberated to what God has planned for it (Rom. 8:19–23). We are not yet all we are meant to be. Our natural circumstances now are not the standard for what we can and should be. Human beings are not to remain static. We are called and empowered by God’s grace to grow and develop into human beings fulfilled in right relationship with God and each other forever. We are not to remain the same as we are now. We are to grow in the capacity, relationship, and calling first described in the opening chapter of Genesis as the image of God.

As creatures created to be creative, it is God’s design to work in, through, and with us. Physical change is part of that process. God instructed Abraham to show his commitment to covenant with God by circumcision (Gen. 17:10). Circumcision is the cutting off of a normal part of the male human body. It is clear that altering the body is not inherently contrary to God’s will; in fact here it was given as a sign of following God. Physical change at the molecular level is not the point of human life, but it too can be an instrumental good. This is not to advocate transhumanism. Transhumanism hopes for human fulfillment in merely extending individual capability and life span. Even fulfilled at its most dreamed-of level, it would not produce whole human life. Christian faith calls for life in right mission and community with God and one another. Life is to be shaped at all levels out of love for God and one another, not self-absorption. We best grow to serve, not to displace into ultimately pointless self-aggrandizement. It is not that self-love is inherently wrong. Jesus taught that we should love our neighbors as ourselves, not more than ourselves. Our hardwiring is such that we are naturally much more directly aware of our own desires, such as hunger, than of someone else’s. To consider the needs of others as being as important as our own is actually quite a high standard and one that requires significant sacrifice of immediate self-interest. The problem is not in caring for oneself, it is in not caring for God decisively more and our neighbors as much as ourselves.

Could intervening in the human body at the molecular level affect our default tendency to self-centeredness? Sin, placing anything other than God at the center of one’s life, is more complex than physical disposition, yet physical disposition pays a role in basic heart orientation and how it is carried out. Most human tendencies can be channeled in positive or harmful ways. Molecular change cannot single-handedly resolve what we do, but there may eventually be ways to contribute positively, such as by building up the usually present human reticence against murdering another. Also, genetic intervention might be able to contribute to rolling back some of the embodied tendencies toward sin. Parents and day-care workers will still be more formative for perception and practice than molecular intervention is likely to be. But where it can contribute its part, as is expected of every other resource, it could be welcome as yet another expression of love for God and neighbor.

Direction

So if human life at the molecular level, as at every other level, is to be shaped to God’s service out of love for God and one another, what should it look like? I have argued thus far that intentionally modifying our bodies can be not only permissible, but even part of our calling to responsible stewardship of what God has entrusted to us. However, there is a long history of human beings misdirecting their developed capabilities. One of the worst relatively recent examples was the racist mass murder that the Nazis perpetrated in the name of the health of the people. The worst evils are often perpetrated in the name of recognized goods. The Nazis also commandeered the education system, but we do not now reject schooling. The Nazis co-opted the medical system, but we do not now inherently mistrust all physicians and nurses. In biblical terms, the destruction of the tower of Babel was a warning against putting bricks together to try to be God, but it is not a warning against putting bricks together to build homes. That something can be turned into an idol or turned to abuse means that it requires caution, not that it is necessarily harmful of itself.

So how can we genuinely serve in this area? In postmodern times consensus on the required discernment is often hard to find. Rather than agreeing on what we will do, we often agree on who will decide what we will do. This would not be a bad course in regard to much of molecular intervention, in that one choice pursued by all risks the most marked danger. Disseminating decisions widely would limit unintentional damage by courses that turn out to be mistaken, make it difficult for one large group to use choices against another, encourage the opportunity of trying a wide variety of directions, and enhance the rich diversity of life. Yet some choices for oneself or others might be so ill-advised that there would be sufficient consensus in a public to limit them. We face similar life-shaping choices, dialogue, and limitations in how we provide education and medical care.

Three guides for individuals and the public have been proposed that draw attention to important considerations, although they can be damaging if treated as final standards. One of these distinctions is between intervention that is somatic and intervention that has germ-line effects. “Somatic” means that the effect of the intervention is felt by only one recipient. This has the marked advantage of honoring the recipient’s choice if they are competent to so decide, and limits any unexpected damage to just that one person. However, many somatic treatments end up having effects in descendants (the germ line). If a young patient is somatically treated for heart disease and then lives to have children of his own, the genetic tendency toward that kind of heart disease is now passed on to others who would not have been born if the disease had run its course. Now the genes for that disease are more prevalent. That is a germ-line effect from what was intended to be a somatic treatment. A further question for the distinction is that if a treatment is safe enough for the person who requests it, why not for the recipient’s children? If a genetic treatment becomes available to stop Huntingdon’s disease (HD), which kills its carriers usually in their thirties or forties, why free only the presenting patient, and not their children? As much as possible people should be consulted about what will affect them, but countless formative decisions are made for us before we can speak for ourselves. My first language and where I grew up shaped me deeply, but were not my choice. That is the human condition. Why rule out help that we are confident will be appreciated? If not, to insist on only acting with competent consent would also stop life-saving surgery for children with appendicitis.

A second distinction that is argued is that between gift and artifact. Children should be born and received as gifts, not something that we choose and make (President’s Council on Bioethics, 2003). There is a great truth here that all children should be welcomed and nurtured whatever their abilities (Hall 2008). But such is quite different from saying that all children should be left as they are. When a child is born with a blocked intestine, it does not mean that she should be left to die as if this were simply God’s design and will for her. If we know a way to help her thrive, we should provide it. That we have done a tonsillectomy for Johnny does not make him any less a gift or a person. Our motivation may be precisely that we care about him as a beloved person.

A third distinction often invoked is that between correction and enhancement. It is crucial to realize that all intervention can be described as enhancement. If a high temperature is relieved, the body’s ability to regulate temperature has been enhanced. If one sets a broken arm bone, one has enhanced the recipient’s ability to heal that arm. Granted, some define cure as a subset of enhancement that is limited to normal, but what then is “normal”? Is normal having teeth that do not meet well for maximum use and lifespan, hence braces would be an unacceptable enhancement? Is the typical lifespan of 30 in Uganda the appropriate norm because it is the average there? For that matter, ability is spread over a range in most populations. Some people see better than others. If those above the average remain where they are while those below are brought up to average, the average will go up and more people would be eligible for improvement to average. There would be little long-term difference between cure and enhancement so defined. What is normal or healthy is not as easily described as this demarcation assumes (Tengland 2007). Further, why should normal be normative? I have argued earlier that what is now is not final for the Christian tradition.

In contrast, there are three standards that have gained wide consensus for centuries that can help us better discern helpful intervention. John Rawls (1971) thought that they are recognizable to all free, rational people. They are nonmaleficence, autonomy, and fairness. The most widely used textbook for bioethics (Beauchamp and Childress 2008) uses basically the same set, with nonmaleficence differentiated into nonmaleficence and beneficence. These authors describe these principles as the consensus of a long Western tradition, and indeed it is a long tradition. One can see these three principles 2700 hundred years ago when the prophet Micah (Mic. 6:8) wrote, “What does God require of you? That you seek justice, love kindness, and walk humbly with God.” “Seeking justice” in Micah parallels the fairness and justice just referred to. “Love kindness” can be seen in nonmaleficence and beneficence. “To walk humbly with God” would require an attitude of respect and openness, communicated in the later lists as respect for persons or autonomy.

These principles are not always defined precisely the same way and of themselves do not offer an order of priority. When two seem to conflict, which takes precedence? They do, however, raise key questions and concerns for deliberation. I propose here a version of the list as it might apply to shaping life at the molecular level, such as in genetic or neurological intervention. Considering loving kindness and nonmaleficence: (1) is the intervention reasonably safe? This question has a long history, as seen in primum non nocere; at least do not make the patient worse (Peters 2004). Avoiding harm has become almost the exclusive norm in some legal jurisdictions (Brunk 2004). It does require for application answers to further questions such as what constitutes a “harm” or what is significant risk. My intent is to be informed by the Christian tradition for a contextualized description that is needed by any actual practice (Walzer 1994).

Taking into account loving kindness and beneficence: (2) is the proposed intervention offering a genuine improvement? Note the standard is improvement, not perfection (Greely et al. 2008). It is a false dichotomy to characterize the options as either trying to surpass our species or doing nothing at all. Results can become quite complicated as the outcome of multiple consequences at interactive levels. For example, some transhumanist proposals to relieve negative emotions may incur too high a cost in lost relationship and care for others. The ultimate context of a Christian vision of enhancement is not personal preference, rather God’s revealed calling.

Walking humbly and respect for persons lead us to ask: (3) does the intervention increase recipient choice? This question is intended to ensure that no one is or feels predestined by others (Habermas 2003). If choices made on behalf of others increase their choices, the recipients are still the ones who make many of the most formative decisions for themselves. Increasing choice would not lead to accepting the request of a deaf couple for prenatal genetic diagnosis to implant only embryos that would lead to deaf children (Murray 1996). While people can lead fulfilling lives in deaf culture, the range of choices is less for the deaf child than for one who can hear. Choice for a recipient should not be unnecessarily restricted.

Each of the key principles listed above includes some sense of justice or fairness: (4) is this intervention the best available use of always finite resources?

Genetic Testing

How might the above standards apply in practice? Intervention in the human body at the molecular level is likely to include eventually a wide range of potential practices such as turning certain genes on or off, or changing neural pathways with genetically designed or nano-built pharmaceuticals. The type of molecular intervention most widespread at this point is genetic testing. It is easier to read the human genome than it is to change it. The impact of genetic testing and the questions that it raises are already substantial. Working through some of these challenges can begin to unpack how we could deal with related questions to come. I have already argued that sustaining, restoring, and developing the human body is part of human responsibility in the Christian tradition, and that four questions might structure our thinking about what we should do. Addressing specific cases brings to the fore yet more considerations. For example, the respect for persons or autonomy advocated in the last section as a key question to consider can be complicated to pursue in practice.

One might be puzzled when a physician asks many questions about one’s parents and siblings. This is your appointment, not theirs. Yet a physician will often start with such questions. They are a primitive genetic test. By learning something of genes in the family, the physician gains some idea of what genes the patient may have inherited. That is helpful information. Genetics makes a difference, sometimes more weighty than environment. Winston Churchill was overweight, had an ever-present cigar, and enjoyed copious alcohol consumption. He died at 90. Sergei Grinkov was a seemingly healthy non-smoker, light drinker, and Olympic athlete but died of heart failure at 28. Genes matter. Of course one receives only half of each parent’s genes and the inherited genes may have been hidden in the parent that passed them on. What is needed is some way of reading precisely which genes a particular person has inherited. The cost of doing that is dropping exponentially. Francis Collins projects that the reading of an entire individual’s genome will soon be affordable for many.

Yet even if we can read a person’s genome, we do not yet know what most of the DNA is doing. There are key steps between the genetic code and how it is expressed as studied in epigenetics. Further, our 23 000 genes live in the context of over a million genes in the bacteria that inhabit our gut and skin in interrelated symbiosis with us. Despite this complexity and our just beginning knowledge of genetics, genetic testing is already in active use for five major applications. It can be used to support a diagnosis, to better target conventional treatment, to plan for disease effects, to help avoid disease effects, and to discern carrier status. Most of the ethical questions that are raised overlap with concerns about other therapies, but some challenges are heightened and some are quite new. I have advocated in this chapter for respect for the presenting person, sometimes called autonomy. This is a demanding standard when genetic testing provides unintended revelations. Finding two copies of the APOE4 allele when testing for a particular problem with cholesterol can indicate greater risk for early onset dementia. The cardiologist looking for one concern has discovered another. An adult interested in bearing a child might want to know if she has HD. As a dominant single-gene disease, a test result that she will experience HD reveals that her parent will too, even if her parent did not want to know that information. The overall uptake for predictive testing is about 18% of the adult at-risk HD population in Canada (Creighton et al. 2003, 462–475). In other words, 82% of Canadians with an HD parent do not want to know if they will have the disease. This is why minors should not be tested for conditions that have no current treatment or effect on planning. Most minors decide not to be tested for HD when they become adults and can choose for themselves. There would need to be a compelling reason to take that choice away from them.

Another example is that of misattributed paternity. When a couple has a child whose care is extremely taxing, it is not unusual for them to ask for genetic counseling concerning the chance that the next child they have together will be so afflicted. In these cases a small percentage are found to be at no risk for repetition because it is genetically revealed that the presented father is not the biological father. It may seem simple to lie to the couple about paternity, but such deception undermines that patient–physician relationship as well as future relationships with other care providers. Furthermore, deception misleads the future decisions of the patients. For example, if they separate, the presented father will continue to believe that he is carrying a genetic disease when in fact he is not. Deception in addition denies the patients information that they asked for in the informed consent that is required by respect for persons. That this situation can arise is a reminder that the presenting couple should be told about the possibility of misattributed paternity being discovered before the test is conducted. If such disclosure is listed along with many other potential revelations before the test is done, the couple can decide to withdraw if they so wish. If they proceed, the results are rarely a complete surprise. Care providers should present such findings gently, for example to the woman first in case she may want to be the one to present the finding. If a woman seeks reproductive counseling without her spouse, the provider is not obligated to find and inform the spouse, but if a couple presents as a couple, then they as a couple are the informed patients and should not be deceived.

A further complication of genetic testing is that while genes are formative they do not act unilaterally. Genes are important, but are usually not determinative, so genetic test results will most often be in probabilities. If an identical twin has diabetes 1, the chance of the other twin having diabetes 1 is about 50%. That is a much higher risk than for the general population, but identical genes do not lead to identical disease experiences. Half of the identical twins will never develop the disease. This raises the problem of how to communicate such probabilities. Which would you rather hear, that this will not significantly affect you 9 times out of 10 or that you have a 1 in 10 chance that this will significantly affect you? These two descriptions convey identical probabilities. But as seen in the success of lotteries, most people do not comprehend probabilities very well. If informed consent is actually to occur out of respect for persons, significant resources are required for patients not only to receive genetically based information, but also to understand the import of it. Written or video explanations and personal attention from, for example, a genetic counselor become crucial.

The standard of nonmaleficence is challenged by genetic testing in the status of developing life. Genetic testing in the earliest days of conception can be used in prenatal genetic diagnosis to decide which embryos to implant, or later for fetus selection. Such selection would be nonmaleficent and could indeed be kind and helpful before a fellow human being is present but difficult to justify once one is. This requires, then, careful thought about stages of development unaddressed in earlier eras. While the Christian Church has long exhorted against abortion, this was with reference to stopping pregnancy after the first missed period or after what Church leaders called formation. Thomas Aquinas, for example, recognized the presence of an ensouled body only after there was a body to ensoul. By his understanding of the best science of his day, that was at least 40 days after sperm and egg met. Modern science has not settled the matter in that it describes a continuous process of syngamy that takes the first 24 hours after sperm and egg meet to actually merge genetic endowment, that two-thirds of that which combines egg and sperm never implants, and that whether there is one egg and two individuals beginning (identical twins) or two eggs and one person (a mosaic) is not settled until 14 days after sperm and egg first begin to combine. The Roman Catholic response has been to rule against contravening at any point in the process, including a prohibition on physical contraception. There is clear warrant in the Christian tradition to extend an inclusive love of neighbor, especially for the most vulnerable, but such concern does not directly tell us of itself when in the development of human life there is a neighbor present to love.

The Christian commitment to justice raises concern that genetic testing substantially changes the insurance industry that so many people depend on for access or supplement to medical care, or for life insurance. Insurance depends on an equality of ignorance between the insurance company and the person insured. The insured pays into the insurance company because she may need coverage later. The insurance company accepts the insured in hopes that she will not, in which case it can apply her premiums to someone who does need the payout. Insurance companies do not print money; they just transfer it. Genetic testing undermines the required uncertainty. If the prospective insured knows from genetic tests that she will likely need an insurance company payout, she is more likely to buy insurance, indeed the most generous policy she can, while the person who hits the genetic lottery with little risk of disease is likely to favor other expenses. The insurance company then does not have enough money coming in to pay claims going out. Conversely, if the insurance company knows from genetic testing that the potential insured is likely to require large payouts, the company will not want to insure for that condition or will require premiums that are large enough to meet the expected payout, hence more a savings plan than insurance. The premiums may well be too high for the potential insured to purchase. Insurance is then available for everything except what the purchaser is most likely to need. Legislation to prohibit insurers from requiring genetic test results can be circumvented by companies offering discounts to those who volunteer genetic test results. Those who do not avail themselves of the discount would be assumed to be the ones at higher risk. Coverage is lost if the insurer knows genetic test results. Coverage is lost if the insurer does not know the genetic test results. Genetic testing is increasingly changing the context such that the financing of medical care and life insurance will need to change quite dramatically if all are to receive the care that they need.

Conclusion

Life, and so bioethics, is complicated. It requires working together in Christian community to thoughtfully think through the challenges to serve God and one another as best we can. I have argued that God’s people are called in part to sustain, restore, and develop the human body. Developing the human body is not the end purpose of life, but the body does have a role to play as God shapes people into those who can enjoy and glorify God forever. Rightly developing the body will include making widely disseminated choices that are safe, lead to genuine improvement, increase choice rather than predestine recipients, and are fair in using resources. The Christian tradition and community can give context and valuation to help work through these complex decisions that come with new opportunities to serve.

References

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