Mostrar mensagens com a etiqueta biotecnologia. Mostrar todas as mensagens
Mostrar mensagens com a etiqueta biotecnologia. Mostrar todas as mensagens

quarta-feira, 27 de novembro de 2013

Facing the Fallout of Artificial Reproductive Technologies – by Jennifer Lahl, founder and president of the Center for Bioethics and Culture.

In CWR

“Egg or sperm donors don’t help other people have children, they help other people have their children,” says Jennifer Lahl, founder and president of the Center for Bioethics and Culture. 

Lahl spoke with Catholic World Report about her work to assist the most defenseless affected by the rapidly changing and largely unregulated world of biotechnology. 

The CBC has produced three original, award-winning documentary films: Anonymous Father’s Day (2011), about children of sperm donors who long to know more about their biological fathers; Eggsploitation (2010), which uncovers the serious risks associated with human egg donation; and Lines That Divide (2009), focusing upon the stem-cell research debate. 

CWR: Your work at the Center for Bioethics and Culture tries to help the most vulnerable affected by biotechnology. Other than, say, “spare embryos” from IVF, who else are you looking to assist? 

Lahl: Our work focuses on end-of-life issues, like euthanasia, and “making life” issues via assisted reproductive technologies. The most vulnerable we seek to give a voice to are those facing terminal illness, disabilities, [the] suffering (those society says have a life not worth living), and also the stakeholders in assisted reproductive technology (ART), e.g., egg donors, surrogate mothers, and the children created by these technologies. 

Of course, we do advocate against sperm donation too, and it may be a stretch to say a sperm donor is vulnerable, but we seek to educate them on the realities of donor conception.  I often say to egg donors (and it could be said of sperm donation), you didn’t help a woman (or a couple or man) have a baby, you helped her have your baby. 

CWR: The intense emotional desire to be a parent is the main motivation behind surrogacy and technologies like IVF. Your work, however, especially your films, focuses on different sets of emotions beyond those of potential parents. Tell us about those. 

Lahl: Our films are feature-length (versus shorts), partly because the complexities we lay out require more than your typical short film. What is really lacking in the discussions of ART [that deal with] with infertile couples (or even couples/individuals who use third-party reproductive technologies) is a fully orbed discussion of ALL the stakeholders. Buyer and sellers. Donors and recipients and, of course, the children. 

My background is nursing. I worked for over 20 years in nursing, primarily in pediatrics. I understand the realities of the medical risks and procedures to women and children. I read the data about these risks—known and unknown—and also about the reality that the majority of IVF cycles fail. I’ve taken care of preemie babies in intensive care units and seen the harm done to children born out of multiple births. Also, I’ve met and interviewed women seriously harmed by making the decision to “donate” their eggs, and children, now adults, conceived by donor conception who are not “alright,” like Hollywood purports. These stories, these voices, these facts demand to be included in the conversation. Sadly, the industry stakeholders only tell the happy stories of desperate couples who get children of their dreams.  

CWR: As more and more people are conceived through sperm donors or born of surrogate mothers, are there unexpected consequences playing out in the lives of these individuals? 

Lahl: I suppose one surprising thing that is happening is they’re finding each other via social media and online forums, so that they are building a community—working together, sharing their stories, which validates many of their thoughts and feelings. Typically, these people are told to be happy they were wanted. Be happy they are alive. Be thankful for these technologies which gave them life. And, of course, they are happy to be alive, but it’s valid and legitimate that they may not be pleased with the method of their conception. 

I remember doing our premiere screening of our film Anonymous Father’s Day in NYC. Many of the donor-conceived people in the film and in the social media world were on hand. While many of these people “knew” each other via emails and Facebook, etc., it was so fun for them all to meet each other in person, gathered around a  common theme shared by them all.  

CWR: What sorts of resources are there for someone in this position who wishes to know more about his biological parent or parents? 

Lahl:  DNA home-testing has really dropped in price and become affordable for many. So, along with DNA testing and groups like the donor sibling registry, people are making matches with biological parents and half-siblings. As these technologies become more prevalent and advanced, it really will be hard to keep anonymity a reality in third-party agreements. But of course all of this testing and matching depends on the child being told their conception story…. Many people do not tell their children they were conceived by donor eggs or sperm.  

CWR: Egg donation is on the rise, especially since women can be paid for their eggs. Are there risks involved for the donor? 

Lahl: I encourage all to watch Eggsploitation, where we outline the short- and long-term risks of egg donation. Naturally, any woman undergoing a surgical procedure to harvest her eggs [faces] all those risks—bleeding, infection, risks of anesthesia, risks of the drugs she takes to produce many eggs (egg donors typically produce upwards of 20, 40, 60 eggs at a time). 

The most serious short-term risk is Ovarian Hyperstimulation Syndrome (OHSS), which can cause strokes, organ failure, even, in rare cases, death. Young women (exactly the egg donor profile) are most susceptible to OHSS. And of course, unlike the infertile woman, who is treated like a patient, the egg donor is being paid to produce lots and lots of eggs, and is therefore more aggressively stimulated. Long-term risks are more problematic to identify, since we have not done the necessary studies on what I call the “healthy non-patient” egg donor. There are cancer risks from fertility drugs. There is the risk to the donor of lost or damaged fertility.  

CWR: In general, the entire enterprise seems to be very risky, with only 19 percent of IVF treatments being effective, but also in terms of health and the well-being of the children created through these technologies. Is there any regulation of the industry to make people aware of the risks? 

Lahl: Sadly, there is no regulation in place to provide people with information about these risks. In my state of California we attempted to pass modest legislation which would have required egg-donor ads to have a warning label, similar to cigarettes, stating that no long-term studies have been done on this practice. The industry stakeholders (very wealthy and powerful) got involved and were able to gut the bill then-Governor Arnold Schwarzenegger signed, which said if you follow the American Society for Reproductive Medicine guidelines (which are meaningless and non-enforceable), you are exempt from placing warning labels on your ads. Of course all the agencies say they follow the guidelines. It shows the uphill battle we face in protecting and fully informing women.

quinta-feira, 4 de abril de 2013

St. Francis, Christian Love, and the Biotechnological Future - William B. Hurlbut, M. D.

In The New Atlantis  

Sometime near the end of the twelfth century, a wealthy young man named Giovanni Francesco di Bernardone came upon a shepherd driving his flock to market. And apparently for the sheer joy of it — the extravagant pleasure of saving those sheep from slaughter — the young man promptly bought the entire flock, led the sheep out to open meadows, and set them free.

This is the man everyone knows as St. Francis of Assisi (ca. 1182–1226) — namesake of the newly elected pope, a saint beloved throughout the world, even by people who have nothing to do with the Catholic Church. A figure of the High Middle Ages who has been called “the morning star of the Renaissance,” he seems even now, almost eight centuries after his death, to radiate all that is most liberal in our modern mood: the joy of nature (he is the patron saint of ecology), the love of animals, a profound social conscience, an endless compassion for the poor and downtrodden.

And yet, consider another story about this man. Later in life, in the full flowering of his compassion, his followers came to ask him if they should serve meat for Christmas, the feast of the Incarnation, and he answered, “On a day like this, even the walls eat meat — and if they cannot, then let them be spread with meat.” This too is St. Francis, and in that image of meat smeared on the walls in exuberant joy at the birth of Christ, he affirms what he recognized as the pattern and purpose of creation, the drama of death and redemption.

Somehow St. Francis remains both universally admired and broadly misunderstood. In his almost childlike cheerfulness and generosity, he seems at times the most human of human beings: “the man of poverty, the man of peace, the man who loves and protects creation,” as the new Pope Francis has described him. But in the severity of his self-denial and solitary vigils, St. Francis of Assisi also seems strangely discordant with the modern culture he helped create — his life both familiar and distant, genial and disquieting. It is as though he anticipated the spiritual outlines of all that was to come: the great new possibilities of the modern world and the dangers those possibilities would deliver. Yet within these apparent contradictions may be a treasury of wisdom the modern world urgently needs.

Love and the Natural Order
 
As the popular account of his conversion is often given, the young Francis rode out one day on the plains of Umbria in central Italy. He was well liked by his friends and well known for his extravagant frivolity, but lately he had seemed somehow changed. An illness had thwarted his plans of military glory, and he was troubled by a series of vivid dreams. Along the way, he came across a poor man begging by the side of the road, and drawing closer, he could see that the man was a leper. Francis recoiled at the sight of this wretched and repulsive body, for leprosy was as much a subject of dread in medieval Europe as it had been in biblical times. In pity he tossed the leper a coin and turned away — but then, in even deeper pity, he turned back and embraced the man.

Some of Francis’s biographers (notably André Vauchez, in his recent work) doubt the incident occurred in quite the way it is commonly told, but Francis himself described similar encounters that played a major part in his spiritual transformation: “When I was in sin, it seemed very bitter to me to see lepers,” he wrote in his Testament, but “the Lord led me among them and I did mercy to them. And in going among them, what had seemed to me bitter was changed for me into sweetness of soul and of body.” Freed from his disgust and fear to love others as God loved him, Francis proceeded to give away everything he owned and turned his life to the service of the sick and the downcast, for the glory of the Lord. He took it as a matter of courtesy that he should never be in the presence of anyone poorer than himself.

What followed from these early encounters with lepers would astonish and awaken the world. Through the humble faith of Francis, as in the parable of the mustard seed, the smallest and seemingly most insignificant became the source-spring of an extraordinary transformation and renewal. Others quickly followed him in what they called “holy poverty,” including a wealthy magistrate named Bernard of Quintavalle. (As the Franciscan biographer Efrem Trettel observes, here for perhaps the only time in history the world witnessed the spectacle of two beggars standing in a town square giving away gold coins.) Soon hundreds and then thousands joined Francis, spreading across Europe and beyond. Wearing only a tattered cloak and a rope belt tied with three knots symbolizing the evangelical counsels of perfection (poverty, chastity, and obedience), they walked the world like the grace of God, enlivening faith, reconciliation, and hope, and stirring the most ordinary lives to extraordinary exultation.

All of this forms a vision of life in stark contrast to the aspirations of our own age, our technological moment defined perhaps most of all by the interplay of freedom, pride, and peril. Nowhere is this more evident than in our advancing comprehension and control of living nature. Biotechnology is more than a set of ingenious processes and products. It is also a conceptual and ethical outlook grounded in ideas about the source and significance of the natural world, an outlook informed by philosophical assumptions about progress and human destiny.

The traditional role of medicine, for example, has been to cure disease and alleviate suffering, to restore and sustain the patient to a natural level of functioning and wellbeing. The medical arts were in the service of a wider reverence and respect for the order of the created world: “the physician is only nature’s assistant,” as the Roman healer Galen explained.

But now, armed with the powers of biotechnology, medicine has found a new paradigm, one of liberation: technological transformation in the quest for happiness and human perfection. Slowly but steadily the role of medicine has been extended, driven by our appetites and ambitions, to encompass dimensions of life not previously considered matters of health, with the effect of altering and revising the very frame of nature. Increasingly, we expect from medicine not just freedom from disease but freedom from all that is unattractive, imperfect, or just inconvenient. More recent proposals, of a still more ambitious scope, include projects for the conquest of aging, neurological fusion of humans and machines, and fundamental genetic revision and guided evolution — for transhumans, posthumans, and technosapiens.

The danger is immediately evident. Imagined ideals, untethered from a comprehensive and coherent moral frame, set the course. And desire, deracinated from its natural origins where pleasure and higher purpose are inextricably bound, provides the motive force. In the absence of any concept of cosmic order, where the material and the moral flow forth from a single creative source, all of living nature becomes mere matter and information to be reshuffled and reassigned for projects of the human will.

Yet, notwithstanding these concerns, it is clear that this is not a simple issue. What understanding of nature and human purpose can guide us? Disorder, disease, and death are woven into the very fabric of life. And medicine itself is an intervention over and against the underlying anguish that permeates the natural world. It is our species’ strength, and moral imperative, to aspire to a fuller flourishing of life. Francis was well aware of these realities, for he suffered deeply from bodily ills for which he sought medical care — but ultimately, in affectionate acceptance, he called these burdens “his sisters.”

For Francis, the answer lay, not in escape from the desperations of natural life, but in a transformation in his spiritual understanding of the interwoven meaning of suffering and love. He came to see that the whole of creation, and each of its varied creatures in their distinct strengths and struggles, reflected and revealed the perfection of the Creator. If all things are from one Father, then all are kin and worthy of solicitude and appreciation. It was not nature in the abstract that he loved but every differentiated being in its particularity and individuality. Likewise, he loved not humanity in the abstract so much as individual human beings. He described this love as courtesy, a tender affection and concern for others as precious and unique, as creatures beloved of God; and his courtesy was born not of magnanimity or largesse (with their implicit sense of superiority) but of genuine humility of heart. He became the “little brother” (the Order of Friars Minor is the official name of his followers), placing himself in a position of neediness before others. Not so much a giver of gifts as a “giver of giving,” Francis provided the invitation to give by putting himself in circumstances that drew forth the generosity of others — and with it, their self-respect.

As he treated his fellow human beings so he treated all of his fellow creatures. His great canticle Laudes Creaturarum speaks of sun, moon, and water as brothers and sisters. According to his disciple and first biographer Thomas of Celano, “Even towards little worms he glowed with exceeding love,” and “used to pick them up in the way and put them in a safe place, that they might not be crushed by the feet of passersby.” This was not mere sentimentality but a gratitude grounded in an intimate awareness of the dependency of life. Indeed, on his deathbed he extended his canticle of creation with the words, “Be praised, my Lord, through our Sister Bodily Death, from whose embrace no living person can escape.” How, within the creation of an omnipotent and beneficent God, there can be both suffering and love remains a mystery. But clearly for Francis, that creation was simultaneously material and spiritual — sacramental through and through.

Hubris and Humility
 
St. Francis’s attentive and appreciative disposition toward the multiplicity of natural forms, even the tiniest and seemingly insignificant, expresses an understanding of the universe as an ordered and intricately interrelated whole. This perspective on the natural world as a unity established and sustained within a structure of governing principle and overarching purpose, as opposed to the perverse and capricious inclinations of the gods of antiquity, contributed to crucial conceptual foundations for the birth of empirical science. It is not an accident that Roger Bacon, the thirteenth-century naturalist often called the father of the experimental method, was a Franciscan friar.

Moreover, this Franciscan frame of mind suggests limits on our modern project of biotechnology. Recognition of the fragile interdependence of living nature urges us to be cautious — lest we disrupt the basic balance of being and thereby drain the created order of its beauty, vitality, spiritual significance, and moral meaning. We have no license for an attitude of arrogance as masters and possessors of nature. Plants and animals may be used, not as mere raw materials, but with tenderness, compassion, and genuine gratitude. Genetically engineered featherless chickens for cheaper pot pies and leaner pigs with severe arthritis are a violation of basic kindness and courtesy — of the concern that Francis extended to even the lowliest of creatures.

It is clear that biomedical technology has moved away from its noble and compassionate origins, pulled and persuaded by more immediate desires and images of personal fulfillment. Within the constraints of the natural world, desires provide directions that motivate and empower purposeful action. Now, in our technological era, they have increasingly become ends in themselves — an imperative of indulgence, with all the disproportions and dangers that implies.

It is not difficult to see where this will go in the absence of a higher and more compelling ideal. First, the easy satisfaction of our most infantile and shallow desires, a voluntary trivialization and enfeeblement of soul. Then, an uninhibited technological exploration of the aesthetics of the self. We are already somewhat familiar with these degraded manipulations of natural desire in the personal and social tragedy of substance abuse, but it seems likely that our advancing knowledge of neurophysiology and neuropharmacology will deliver temptations far more difficult to resist.

Equally troubling are the direct social dangers, the pervasive and open-ended competition with others, where biotechnology is deployed in the service of vanity and pride, or simply the unbridled quest for position or power. Building on the principled justifications already established in the practice of cosmetic surgery, we will seek better babies, more beautiful bodies, and superior performance.

Finally, and most disturbingly, there is at least the possibility that the powers of biotechnology will be deployed by the state in a coercive program of social engineering — all in the name of building a better world. Already we have examples of mandatory genetic screening and forced abortion, and one only need remember what was done in the name of “racial hygiene.”

It has been said that people who worship health will not remain healthy, but in the depths of our desires we have always dreamed of something even beyond health. The witness of human history testifies that when we elevate our natural inclinations to the level of a guide, when we move along the gradient of desire, we tend toward disproportion and even perversion — desires become tyrants. And now, in our age, such disproportions and dangers are dramatically magnified by our biotechnology.

In light of all this, one can sense a wisdom in the severity and self-denial that were, for Francis, inseparable from the source of his joy. He had rediscovered an ancient truth in the inversion of desire, not as a negation of being but as a positive passion. In the image of the Lord, he emptied himself and received all things back renewed, purified, and restored in their divine glory. In his humility and self-surrender, Francis became more fully human, more free from temptation and fear, and more free for the fullness of love. Indeed, if G. K. Chesterton is correct, Francis’s severity of self-denial is most rightly understood as romance, a special dedication and devotion freely and joyfully given. In the heroic mode of medieval chivalry, it was for “Lady Poverty” that he lay down his life.

Suffering and Redemption
 
Francis’s life of poverty suggests something far more than just a technique to balance the seduction of the senses and the errors of emotion. Rather, it points to a spiritual anthropology that stands as a corrective to the naïve naturalism that is increasingly employed to describe the human person. Francis understood that spiritual unity with a divine source and significance is essential for the fullness of human life and our capacity for genuine altruistic love. From an evolutionary perspective, acts of altruism are usually described as a naturally grounded mechanism for sustaining social solidarity. And generally, within such accounts, the notion of divine love is considered a mere functional fiction, a projection of the idealizing imagination. In this sense, the heroic acts of Francis on behalf of Lady Poverty can be explained away as nothing but a sublimation of natural inclination. The experience of history, however, is that self-giving love is an indispensable dimension of human flourishing and even human survival. Genuine altruism is the crucial element necessary to sustain shared community and personal peace. And when it is absent, we find conflict without conciliation, bitterness without forgiveness, and misfortune without mercy.

Yet, even if we accept the idea that the self-giving spirit of Francis drew its sustaining power from a divine source, we still face a dilemma. However much we may wish to simplify and sanitize the story of St. Francis, an honest reading of the historical record brings us face to face with dimensions of his spirituality that are remote and disquieting to the modern mind. The same man that greeted the glory of the dawn sought out the silence and solitude of the cave, and the same hands that stretched out in joyous welcome to the little birds, bore, according to the testimony of his companions, the very marks of the wounds of Christ. Indeed, Francis had prayed that he would know the pain of the passion of his Lord, in order to comprehend more fully the depth and meaning of God’s love. This was no mere moderation or rebalancing of desire; the spiritual transformation in the life of Francis was a radical realignment — a recognition that the whole of the present disposition of creation, in both its beauty and its suffering, is an unfolding story of sacrifice and redemption.

This acknowledgment of the centrality of suffering in the order of the natural world does bear a certain superficial similarity to the picture given by evolutionary theory. Yet in the absence of a coherent spiritual cosmology, it is not hard to recognize the deep source of the pessimism and cynicism of our scientific age. The evolutionary panorama presents the spectacle of unspeakable suffering that is inseparably woven into the entire fabric of predation and natural catastrophe. A comprehensive account of the world must reckon with the problem such suffering poses for any notion of transcendent goodness.

Francis faced this issue by recognizing a sacred order of creation in which there is a hierarchy of sacrifice, one in which life is sustained by life — and ultimately, by the willing offering of life in the image of God’s love. But which of these visions of the source and meaning of life is true? Which account are we to believe? Torn between the private lures and longings of self-will and the aspirations of the religious ideal, the fundamental question arises, “In whose image are we made?” In the seventeenth century, Pascal would warn that those who sought God apart from Christ, who went no further than nature, would fall into atheism. The natural world, with its strife and struggle, poses a question that it cannot answer: How can there be both suffering and love?

Yet with this question the deepest meaning of the material world is opened to understanding. All of creation, and its evolutionary ascent to mind and moral awareness, may be recognized as a kind of living language in an epic tale of the deepest spiritual significance. Through the eyes of faith, the entire cosmic order of time and space and material being may be seen as an arena for the revelation of Love, for the creation of a creature capable of ascending to an apprehension of its Creator; but more profoundly, for the reaching down, the compassionate condescension of Love Himself.

There within the human form with its capacity for genuine understanding and empathy, moral truth was revealed in matter; the true Image of God was borne within a body. In the face of Jesus was made evident the face of Love, and most specifically in His suffering on the Cross. Those who looked upon Him felt His pain, yet recognized His righteousness and knew the injustice of His plight; His was the ultimate, defining act of altruism.

In this the transcendent was revealed in and through the immanent; nature and God were reconciled, and the cosmos was restored to its intelligibility. The fullness of Love was revealed in human form. In that moment of human history, the entirety of creation was lifted to another level of meaning. The evolutionary struggle, the seeming futility of suffering and sacrifice and death itself, was raised to the possibility of participation in a higher order of being. In the drama of death and redemptive love — as in both the story of his rescuing the flock of sheep and the story of his urging his followers to smear the walls with meat in celebration of the Incarnation — Francis saw the ultimate design and purpose of creation.

Christian faith is a faith in the God whose nature is Love — an affirmation that reaches beyond all suffering to the ultimate goodness of life. It is here that, while decisively denying the pessimism, cynicism, and amoral implications of a purely naturalistic psychology, Christianity may at once affirm the reality and positive significance of the material world and its evolutionary process. In the emergence of moral nature and the capacity for genuine spiritual understanding, humanity, as the culmination of creation, is called into communion with the very life of God, the life of Love.

Torn and tattered, frail and needy, but joyful in the freedom of love, Francis of Assisi provides a startling juxtaposition to the ambitions and appetites driving our images of perfection in this age of biotechnology.