An Agenda for the New Social Statement on Genetics

With What Should the ELCA Grapple in the Study Process that Forms the Process Leading to a Social Statement?  

[1] It is an article of faith--among scientists no less than among Christians-- that the natural world is intelligible. While science cannot explain why this may be so, believers construe the regularity and intelligibility of the universe as the work of an intelligent and beneficent creator.[1] For them, the recent rapid expansion of our understanding of genetics represents a remarkable stewardship of God's good gifts of curiosity and intellect. Of course, how we use our basic scientific knowledge of the operation of genes is properly subject to more nuanced appraisal.  

[2] According to a 2004 ELCA social policy resolution, The human capacity for genetic manipulation should be understood, in principle, as one of God's gifts in the created order to be pursued for the good of all. As with any such gift, it must be used responsibly and tested for its contribution to justice and stewardship.[2] The challenge for the church as it drafts, deliberates upon and, hopefully, decides to adopt a new social statement over the next four years is to unpack the meaning and to discern the import of those two sentences. Just what is the created order within which we are to act responsibly? Is it static or dynamic, fixed once and for all time or continuously evolving? Is there an essential human nature within the created order to be protected from biotechnological alteration or should we see ourselves as co-creators whose freedom allows us to re-create human nature as we see fit? If God created and called it good," maybe we can make it better. The Resolution says that genetic manipulation should be pursued for the good of all, but what does that mean? Do we have a common determinate understanding of concepts such as the good or the public interest? If not, must we content ourselves with the utilitarian strategy of making as many folks as possible happy, whatever it is they happen to want? And who is included in the all whose good is to be pursued? Does it include embryos, fetuses, and future generations? Does it extend to all of our near and distant neighbors on the planet or primarily, if not exclusively, to those of us fortunate enough to have the opportunity to contemplate bioethical matters or possibly to benefit from genetic manipulation in the future? Should we consider the good of non-human animals? How will the burdens and benefits be distributed?   

[3] Now I've raised several questions, but the resolution I quoted stipulates some answers based upon two previous social statements, Caring for Creation (1993) and Sufficient, Sustainable Livelihood for All (1999).   For all means that economic activities should be assessed in terms of how they affect all people, especially those living in poverty (SSLA p. 4.3) ·  Stewardship means that all our efforts serve the best interests of creation's integrity in imitation of God's care for us (CC p. 3.2) ·  Justice requires, among other things, that all living things are entitled to be heard and to have their interests considered when decisions are made (CC p. 6.4)[3]  

[4] Two additional ELCA social statements are relevant to our consideration of genetics. In Abortion (1991), we say that human life in all its phases of development is God-given and, therefore, has intrinsic value, worth, and dignity but later on observe that although abortion raises significant moral issues at any stage of fetal development, the closer the life in the womb comes to full term the more serious such issues become.[4]  ¼ the parent(s) may responsibly choose to terminate the pregnancy.[5] Thus the statement seems to hold a developmental view of the human that would not accord full human status from an imagined moment of conception. Indeed the ELCA recognizes that there are circumstances of extreme fetal abnormality, which will result in severe suffering and very early death of an infant and in such cases,  

[5] In Caring for Health: our Shared Endeavor (2003), the ELCA commends the important work of medical research and supports investment in its goals of healing afflictions, relieving human suffering, and promoting well being.[6] At the same time, it recognizes that human beings are still finite despite the fact that we live in a culture that often denies death and suffering and places its faith in technology to overcome them.[7] The statement calls this faith unrealistic and urges caution about research that expands medical technology based primarily on market pressures.[8] Priority should be given instead to research addressing those medical interventions that are likely to improve substantially the overall health of the general population.[9] Both Christian love of neighbor (agape) and justice require us to work to promote the health and healing of all people and provide access to health care for all people in our society.[10] Moreover, it's not enough to advocate universal access. The statement urges us to consider our own health care decisions within the context of the just distribution of health care resources asking not only whether we are being served as individuals, but also whether anyone is being left behind in the ongoing advance of medical progress.[11]    

[6] With due apology for this long recitation from these somewhat magisterial texts, I think it worthwhile to recall some of this language from previous statements. If ELCA social statements are going to be mutually consistent and form a coherent body of social teaching, it would seem appropriate to do so. But there is nothing I'm aware of in our foundational documents to say that new statements must be consistent with the old. Since there are provisions for amending or even withdrawing social statements, I suppose the church could choose to go in radically different directions. But even if the existing texts are taken to provide background beliefs that the ELCA brings to its moral reflection on genetics, they do not necessarily prejudge or determine our ethical analysis of present and future biotechnological applications of genetics.   [

7] A few comments on methodology: I suspect that the statement will have to be selective and focus on broad themes since it will not be possible to provide thorough analysis and conclusive judgments on all of today's technologies and choices.   In a field as dynamic as genetics, things can change very quickly. It would be prudent to draft the statement in a way that might maximize its shelf life, and a broad focus should help in that regard. At the same time, the statement must not remain so abstract and general that it reads like a series of platitudes. It may not be sufficient simply to identify 'middle axioms' derived from our theological anthropology that could be used to make moral judgments.   We may need to illustrate a few applications of the axioms but will not be able to analyze, much less pronounce upon, the full array of genetics issues.   In this paper, I do not say anything about genetically modified food or the loss of biodiversity in food crops but these are matters I'm sure we'll want to address in the statement. Nor do I consider the ethics of human embryonic stem cell research (HESCR) or cloning in either its research or reproductive applications. While it might seem desirable for the statement to avoid making judgments on HESCR or research (a.k.a. therapeutic) cloning because these highly controversial issues might predominate and choke off attention to other issues in genetics, I wonder whether that will be possible. Were a draft to be circulated that did not offer guidance in this area, our constituency might insist that these topics be included.[12]  

[8] My second methodological concern is that I hope we can resist the temptation to lard the text with gratuitous biblical quotations or citations. Prior to Peace and Politics (1984), Lutheran Church in America social statements managed to be profoundly biblical without prooftexting. Some recent ELCA documents seem unable to say anything without summoning scriptural support. Perhaps the statement on genetics can reverse this unfortunate trend.  

[9] Finally, I think it will be important for us to be circumspect as we deploy theological concepts to illuminate our path through the moral quandaries of genetics. For example, doubtless we will want to refer to the imago dei but we would do well to remember that its precise meaning is obscure. Historically, it has been given multiple interpretations; some of which could as easily be said to warrant genetic manipulation as to constrain it.    And yet, we often fixate on such terms -- 'law and gospel' and 'two kingdoms' are among our particular favorites -- obsessively fussing until we think we have their meaning just right. I remember that in 1982, Lutheran Church in America Convention delegates were considering the adoption of a proposed social statement on Death and Dying. The opening theological section of the statement observed that death could be interpreted in several ways; one of which was as a friend in circumstances of acute and intractable suffering. The debate on this particular image went on for a considerable time. Many lay delegates spoke (sometimes with great emotion) of how important it was to them to have this honest and humane admission in the text. Other delegates, almost all of them in clerical collars as I recall, vigorously opposed this language because St. Paul says death is an enemy.[13] In contrast, there was hardly any debate of the statement's treatment of ethical issues such as direct, active euthanasia, physician assisted suicide, and withholding or withdrawing treatment (including artificial nutrition and hydration). That section sailed right through. Now either those of us who worked on drafting and presenting the statement were superb in our ethical analysis and judgment, or the delegates' priorities were somewhat askew. In the new genetics statement, I hope that we -- especially the theologically trained among us -- will practice a bit of self-discipline with respect to our favorite activity.  

[10] So, what should we grapple with in the genetics statement? As I thought about this presentation, I assumed that by this final session of our convocation, many of these applications and their attendant ethical, legal and social issues would already have surfaced. So rather than attempting to offer an exhaustive (and perhaps, exhausting) survey, I thought it better to identify a few general areas of concern that the new statement might address. For the most part, I shall simply be following the agenda set forth by Francis Collins (Director of the National Human Genome Research Institute at the NIH) in February of this year when he spoke to the President's Council on Bioethics on the topic The Genomic 'Revolution' and the Practice of Medicine.[14] Doubtless, there are additional things we should think about in our discussion and in the statement, but his list isn't a bad place to start.    

Privacy and Discrimination  

[11] Way back in 1972, the Journal of the American Medical Association published A Patient's Psalm by an extraordinarily prescient Christian ethicist.   The lord is my Genetics Counselor [Paul Ramsey wrote], I shall not want for risks. He maketh me to lie down in genealogies: he nondirects me beside karyotypes. He restoreth my inborn errors: he leads me in the paths of reproduction for my name's sake. Yea, though I walk through the valley of amniocentesis or under the shadow of fetoscopy, I will fear no evil: for thou, the Greatest Good of the Greatest Number, art with me: thy chromosome counts and thy enzyme assays they comfort me. Thou preparest multiphasic screening before me in the presence of my illnesses: thou annointest my head with check-ups; my profile runneth over. Surely mutations and heterozygosity shall follow me all the days of my life; and I shall dwell in the house of computerized biomedical information forever.[15]  

[12] Over the last 35 years, our knowledge of what our genes hold in store for us (or, at least, to what they predispose us) has increased and so have concerns about the protection and proper use of genetic information. Who is entitled to control access to genetic information? How can we assure that patients are not discriminated against in employment and insurance (including life, health, disability or mortgage insurance)?  

[13] Insurance is based upon the idea of pooled risk where a specific individual's risk is unknown. Genetic testing lifts that veil of ignorance.  Where is the line to be drawn between prudent underwriting practices and discrimination? Collins reports that NIH funded studies of familial colon cancer syndromes have significantly benefited high risk patients by alerting them to the need for more frequent monitoring, behavior modification and the importance of early detection. Yet despite this clear benefit available at no cost to patients, as many as a third of the people invited to participate decline out of fear of discrimination. [16] Their apprehension cannot be dismissed. To date, the House and Senate have not been able to agree on legislation to protect privacy and bar discrimination.  

Access  

[14] Today if you want to have your individual genome sequenced, it will set you back about $100,000 -- an expense well beyond the reach of most teaching theologians! But Collins predicts that within 5-7 years you may be able to have it done for only $1,000; provided, of course, that you can pay for it or your insurance will cover it. Is it likely that health insurance plans will cover the expense of genetic testing and related services? Perhaps they will. But what about the 47 million (or more according to some estimates) people without health insurance? If it turns out that only the affluent will be able to benefit from the exciting development of genetically individualized medical diagnosis, prevention, and treatment, then the ELCA's goal of equitable access to health care will recede even farther on the horizon.  

Intellectual Property  

[15] How quickly we (or, at least, some of us) will be able to benefit will depend on researchers having access to basic genetic information. In the 1990s, the United States' Patent Office was excessively liberal in prematurely granting intellectual property rights to discoveries of foundational genetic information. This has inhibited progress, but Collins says that the situation is improving. Now, more information is remaining in the public domain. Nevertheless, he suspects that as we get closer to therapeutic applications, pressure for private profit is likely to mount.  

Bioterrorism  

[16] It's worth mentioning that there is a possible downside to easy public access. If states or terrorists were to become proficient at synthetic DNA synthesis, they might be able to develop and weaponize deadly pathogens against which there would be no defense. How can we keep genetic information out of the wrong hands while assuring that it is within the reach of legitimate researchers?  

Enhancement  

[17] When in 1970 Paul Ramsey published his groundbreaking book, Fabricated Man: The Ethics of Genetic Control, he worried that our knowledge of genetics would tempt us to move beyond the practice of medicine in the service of life toward a project of unlimited self-modification.[17] For him and for many subsequent mainstream ethicists -- both religious and secular, the distinction between medical therapy and genetically engineered enhancement has seemed ethically crucial. Preventing or curing disease and disability in individual patients and their probable offspring is unambiguously good so long as the traditional medical ethical norms of informed consent and non-maleficence (do no harm) are respected. The fact that a specific technique involves genetic therapy or surgery is not, in itself, a cause for concern. But when therapy gives way to enhancement -- attempting to make the patient, her future children, or the species as a whole better than well -- an enormously significant boundary is crossed.  

[18] Parenthetically, I'd add that the requirements of informed consent and reasonable expectation of benefit are often thought to preclude the genetic manipulation of germ line cells. To put a non-consenting child-to-be at an unknown degree of risk for the sake of a highly uncertain benefit is very difficult to justify within the framework of traditional medical ethics. That is not to say that it's always clear where the balance between beneficence and non-maleficence should be struck. This is a perennial problem in Christian ethics.   For example, in Ramsey's opinion, there is nothing more important in the whole of ethics than the consequences for good or ill of man's actions and abstentions -- except right relations among men, justice, and fidelity one with another. The moral quality of our actions and abstentions are determined both by the consequences for all men and by keeping covenant man with man.[18] But we have heard Ted Peters criticize what he called stop sign ethics that seeks to limit our freedom. Elsewhere he has argued that we should be at least as, if not more, concerned about beneficence than non-maleficence.[19] Doubtless, the new statement will have to engage this problem.  

[19] A couple of weeks ago, I happened to be listening to A Prairie Home Companion and there was a commercial for a Minnesota infertility clinic called Norwegenetics. They said, It's up to you, it's your call, but if you are in the market for eggs or sperm, we have donors who are quiet, industrious and able to endure cold weather. So, if you'd like a child who won't talk your ear off and is glad to eat fish, then give Norwegenetics a call. It's funny, but as I'll suggest later, it may not be so far fetched.  

[20] Much attention has been given over the years in both academic and popular media to Brave New World scenarios, designer babies and, as in the film Gattica, the destructive consequences of aspiring to genetically select and enhance one's children. Of course, for a number of biological and cultural reasons, the worst of these imagined perils are unlikely in the foreseeable future. However, the current issue of the Hastings Center Report has no less than five articles debating the need for government regulation of human biotechnologies including what it calls 'reprogenetics' or the intersection of assisted reproduction and genetics.[20] Obviously, there are a number of issues here that the statement might address including the parent-child relation, and the commodification and commercialization of procreation.  

[21] But there are other sorts of enhancement that get less attention. How many people are aware of today's research programs aimed at retarding the aging process by the use of human growth hormone to reverse the loss of muscle mass? A company called Cenegenics has an ad I've seen in an airline magazine and in the business section of the New York Times promoting its program of nutrition, exercise and hormone optimization whose benefits may include improved muscle tone, decreased body fat, increased energy [and] sex drive/libido, sharper thinking and improved outlook on life.''[21] It features before and after pictures of a now extraordinarily buff older gentleman (Jeffry Life[!], MD), shirtless and in tight jeans under the headline How Does This 67-Year-Old Doctor Have the Body Of A 30-Year-Old? or, depending on the version, If This Doctor Can Do it, So Can You. Since nothing is said about the cost of the program, that may be an overstatement. But assuming that it's safe, is there anything that should trouble us here besides the issue of equal access and, possibly, vanity or even narcissism? While I, myself, wouldn't presume to judge his motivation that negatively, I cannot help but wonder where the quest for enhancement may end.  

[22] Maybe it won't end; at least not until we've added 10, 20, or 50 years to the average life span. Researchers have manipulated the enzyme telomerase so as to dramatically increase the number of times a cell can divide before it shuts down and dies thereby raising the possibility of indefinite life extension. How many of us are contemplating the consequences for individuals and society were we to be able to do this?  

[23] Jonathan Swift did, and his depiction of the immortal struldbrugs Gulliver encountered in Luggnagg should make us think twice about the project of indefinite life extension. As Hans Jonas observed in his classic essay The Burden and Blessing of Mortality, the fact that we will not live forever is an instance (relatively rare in the moral life?) of the individual's good coinciding with the common good.[22]  

[24] Perhaps the most realistic type of enhancement (at least, in the near term) is the current practice of pre-implantation genetic diagnosis (PGD) that allows us to biopsy embryos created in fertility clinics and implant only those embryos that do not have certain genetic defects. Collins observes, It is one thing to test for Tay-Sachs disease. It's another to test for [a] gene variant for, say, obesity. And I know that there's a gene variant for obesity that will be published soon that's highly validated. So is there going to be an application there that enterprising marketers to couples who determine to optimize everything will see as something they want to begin to offer?[23] Will we want to set limits on what sort of screens are appropriate? If so, who will set them? What if an infertile deaf couple wants to use PGD to assure that their baby will be born deaf? Would that be an appropriate exercise of parental discretion and control? What should the church say about reprogenetics?  

[25] Last November at the annual meeting of the American Academy of Religion, Collins gave a presentation similar to the one he would give to the President's Council on Bioethics. In a response, the prominent bioethicist Ronald Green observed that there is virtually universal acceptance of cosmetic surgery and orthodontia, and both of these are forms of enhancement. If these are OK, what would be wrong with genetic orthodontia (assuming the demonstrated safety of the procedure)? Of course, that's a huge assumption. It's hard to imagine how the safety and effectiveness of the procedure could ever be demonstrated without conducting high risk research on non-consenting subjects. But Green's point is important and deserves consideration.  

[26] Perhaps the American Academy of Orthodontics might have a problem with genetic orthodontia, but should the rest of us? Is there really a clear distinction between therapy and enhancement after all?  

[27] Lots of human abilities and characteristics are a matter of degree with most people falling in the middle of the range. Were we to start enhancing those who fall toward the lower end of the range, we might find that those previously in the middle now find themselves toward the bottom. Where would this end? Is there a natural stopping place or would we have stepped onto a continuous treadmill ceaselessly pursuing an illusory goal?  

Race and Ethnicity  

[28] We now know that all human beings are 99.9% genetically alike. Many of us welcomed this discovery as empirical support for the religious and moral conviction that we are all brothers and sisters in one human family. Perhaps genetics would become an important ally in the struggle against racism and ethnic prejudice. But what about the remaining .1%? (Lest you think that is too small a percentage to worry about, consider the fact that it is only .6% of our genome that differentiates us from chimpanzees.) It turns out that the variations found in that .1% fall into geographic patterns. People whose ancestors came from places where malaria was prevalent are more likely to have a protective genetic variation. People of northern European ancestry are more likely to have the gene that allows them to digest milk in adulthood. Interesting, but no big deal, you say? Well, Collins reports that as these studies progress, researchers are likely to find regional variations for things other than susceptibility to certain diseases. He says that in the next couple of years, Intelligence is clearly going¼ to have variations discovered that are associated with how you perform on an IQ test. That's inevitable. Similarly, behavioral traits that you measure in a personality test, some of which have already been discovered, although some of them haven't held up very well, we're going to have big outpouring of that as well.[24] If he's right, maybe Norwegenetics is onto something. In any case, Collins advises us to consider how we will cope with a future, and a not terribly distant future, where the wonderful idea that genetics is going to bring us together will, instead, be used to drive us apart?  

Overemphasizing DNA  

[29] Stephan Jay Gould once observed that our need to create order in a complex world creates our worst mental habit: dichotomy, or our tendency to reduce an intricate set of subtle shadings to a choice between two diametrically opposed alternatives.[25] The cause of X must be nature or nurture, genes or environment. While in the past we may have overestimated the effects of nurture, the tide of popular opinion may be changing. Collins is worried that genomics may lead us to overemphasize the role that DNA plays in humanity and undervalue other things, such as the environment, free will, and the human spirit. If parents begin to believe that DNA analysis is determinative (whether it is or not), you might get into the self-fulfilling prophecy kind of outcome, where kids got early on slotted into a particular pathway of what kind of training and experiences they're going to get based upon DNA information that is pretty shaky. That would be unfortunate.[26]  

[30] In this concern, Collins is by no means alone. And it's not just religious and/or political conservatives who share his misgiving. The influential German philosopher Jurgen Habermas fears that genetic engineering will represent not the extension of human freedom but rather an expansion of domination. He contends (unfortunately, in the peculiar idiom of German philosophy) that the designer deprives the designed of the opportunity to establish the symmetrical responsibility required if one is to enter into a retroactive ethical self-reflection as a process among peers. For this poor soul there are only two alternatives, fatalism and resentment.[27] Habermas warns us that, a liberal eugenics regulated by supply and demand would compromise not only our basic equality but our humanity as well.[28]  

[31] When Collins identifies genomics as a contributing factor -- among others -- to the increasing view of humans as more machine-like than spirit-like,[29] I hear a clear, if less bombastic, echo of Ramsey's assertion that heredity mechanistically understood has fashioned a limitless self-fashioning system (man), however imperfect the self-making may turn out to be.[30] But for Ramsey this was not solely or mainly a product of science. Rather,   The boundless determinism and the boundless freedom contained in this [view of human nature]¼. are rather a widespread cultural phenomenon or thought-form characteristic of ¼ the modern period. Dostoevski discerned this to be true. Where there is no God, no destiny toward which men [and women] move and which moves them, then self-modifying freedom must be the man-God.[31]      

[32] If there is even a modicum of truth to be found here, we, and our fellow members of the ELCA, have plenty of issues to grapple with as we move toward a new social statement. In light of our burgeoning understanding of genomics and the unprecedented powers it affords, we would do well to ponder some questions posed by T.S.Eliot:   Where is the Life we have lost in living? Where is the wisdom we have lost in knowledge? Where is the knowledge we have lost in information?[32]      

[1] Keith Ward, God, Faith and the New Millennium: Christian Belief in an Age of Science, Oxford: Oneworld Publications, 1998, pp. 51-59.  

[2] ELCA Social Policy Resolution on Genetically Modified Organisms in the Food Supply (2004), p.5.  

[3] Ibid., p. 4.  

[4] Abortion (1991), pp. 2 and 7.  

[5] Ibid., p. 7.  

[6] Caring for Health: our Shared Endeavor (2003), p.17.  

[7] Ibid., p. 1.  

[8] Ibid., p. 17.  

[9] Ibid.  

[10] Ibid., p. 18.  

[11] Ibid., p. 22.  

[12] For some discussion of these topics, see my "Therapeutic Cloning and Perplexity," Journal of Lutheran Ethics, <www.elca.org/jle>, December 10, 2001 and Embryonic Stem Cells 2007, Journal of Lutheran Ethics, , March 1, 2007.  

[13] A subsequent convention removed death as a friend' from the statement -- the only instance of such revision in either the LCA or the ELCA to date.  

[14] Francis Collins, The Genomic 'Revolution' and the Practice of Medicine ,  

[15] Paul Ramsey, A Patient's Psalm, Journal of the American Medical Association (March 13, 1972) quoted in Bulletin of Atomic Scientists (December 1972) p. 16.  

[16] Collins, p.10.  

[17] Paul Ramsey, Fabricated Man: The Ethics of Genetic Control, New Haven: Yale University Press, 1970, p. 95.  

[18] Ramsey,  Fabricated Man, p. 122.  

[19] Ted Peters and Gaymon Bennett, A Plea for Beneficence in Brent Waters and Ronald Cole-Turner, eds., God and the Embryo, Washington, DC: Georgetown University Press: 2003, p. 128  

[20] The Hastings Center Report, Vol. 37, No. 4 (July-August 2007), pp. 16-31.  

[21] New York Times, August 24, 2007, p. C5.  

[22] Relevant excerpts from both Swift and Jonas may be found in Being Human: Readings from the President's Council on Bioethics, Washington, DC, December 2003, pp.395-402 and 413-425.  

[23] Collins, p. 8.  

[24] Ibid., p, 12.  

[25] Stephan Jay Gould, Dolly's Fashion and Louis's Passion: Ruminations on the Downfall of a King and the Cloning of a Sheep in Michael Brannigan, Ethical Issues in Human Cloning, New York: Seven Bridges Press, 2001, p. 35.  

[26] Collins, p. 16.  

[27] Jurgen Habermas, The Future of Human Nature, Cambridge: Polity Press, 2003, p. 14.  

[28] Ibid., p. vii.  

[29] Collins, p. 8.  

[30] Ramsey, p. 93.  

[31] Ibid.  

[32] T.S. Eliot, Choruses from the Rock quoted by Sherwin Nuland, "The Uncertain Art: Narcissus Looks into the Laboratory, in Glenn McGee and Arthur Caplan, The Human Cloning Debate, 4th edition, Berkeley: Berkeley Hills Books, 2004, p. 135.

© February 2008

Journal of Lutheran Ethics

Volume 8, Issue 2