What if your girlfriend asked you to take a DNA test before you got engaged? Or your employer wanted a DNA test as a precondition for that great new job? Or if, when you got pregnant, your insurance company offered you a discount rate for having your fetus tested and then having its DNA modified (or having it aborted) if it were found to have cerebral palsy?
These questions are not all that far-fetched as new discoveries about human genetics and new techniques for identifying disease are almost daily news. This first set of questions sets the stage for a discussion of the downsides of developments in genetic science. We could also just as well ask: What if you could ensure that the crippling condition that painfully killed your mother would not be passed on to your children? What if you could know that your child would not be born deaf? Or that there were new opportunities for research to cure or even prevent various diseases?
What follows are some of my reflections based on the discussions of Portland, Oregon, Friends on the implications of genetic technology. I encourage more Friends to take the time to become informed on these issues and prayerfully consider the complex, demanding decisions individuals, faith communities, and policy makers may need to make.
What Our Genes Tell Us
In what sense are we children of God? Our DNA determines if we have blue eyes or brown. It determines whether or not we have Huntington’s disease or sickle cell anemia. DNA gives us a propensity to be tall or short; but if our diet is poor, we may be short even if our genes indicate we should be tall.
Similarly, in many other aspects of life, genes contribute but don’t have the final say. There are genes that increase the likelihood of breast cancer, but even with a BRCA allele (one of two copies of a gene that exists in our DNA), a woman may not ever develop the disease. How we eat, the care we are given, our willingness to attend to the Spirit, and many aspects of the world around us are at least as important as our genetic makeup in shaping who we are physically, emotionally, and mentally. In fact, I would expect that genes have almost nothing to do with our spiritual well-being. No matter what our genetic makeup, we do have choice—to face the world with hope, or to live in fear.
Humans seem to have an innate tendency to divide the world into "us" and "them" rather than accepting all humanity as God’s children. The more we know about human genetics, the clearer it becomes that our notions of race are not a valid biological classification for humans. Genes may give us a particular skin color, but genetically, dark-skinned Australian Aborigines are not closely related to Africans.
Scientists have learned that 93 percent of all genetic variability found among humans is found in sub-Saharan Africa. In other words, there is more genetic variation among Africans than there is between Africans and any other groups of people. Geographic variation does seem to play a role. The gene for sickle cell anemia, for instance, is more prevalent among peoples from tropical zones, and offers some protection from malaria. Differences in health, such as the high death rate among African Americans at all ages, cannot be explained genetically and seem to result from environmental factors.
Thus, while our genes somewhat precondition our physical makeup, they do not define the essence of who we are. No one can say for certain when the soul, the divine spark, merges with the tissue that will become a human being. Is it at conception? Or when the cells start to differentiate? Or at quickening? What is a human being anyway? We share between 95 and 99 percent of our genetic material with chimpanzees; the unity of all life is sometimes most evident at the microscopic level of our genes. Many of us believe humankind is made in the image of God, as is all of creation, even as we believe that God is beyond all images and incomprehensible. Having an open sense of who and what God is may make genetics less disturbing for us than if we picture God with a human face. Genetic science pushes us in a new way to ask if we are to be "co-creators," reshaping the human race.
What we believe relative to these theological questions affects how we perceive and judge genetic research with embryonic stem cells, genetic modification, cloning, or abortion.
These are not things we have discussed often as Friends, although European Friends may have dealt with them more than those of us in the United States. This article lays out only some of the questions and issues that could benefit from seasoning. Genetic science is expanding rapidly, with or without our input. Genetic modification of plants and animals is happening. Is this the natural extension of the selective breeding humans have done for millennia? Or does the unpredictability of our actions create undesired results—the way some genetic modifications have spread from test patches of grains in an uncontrolled fashion? What will be the result as our abilities to modify the human genome increase? Will we as Quakers have a testimony to the world on these issues?
An understanding that we are more than our genes can strengthen our sense of free will. If I know my family has the gene that makes us susceptible to alcoholism, I have valuable information that will help me decide whether or not to take wine with my meal. But what seems freeing and empowering to those of us used to digesting a wide range of information, can be totally overwhelming and frightening to others.
Individual resiliency, education, stability of family life, and much else affects whether people see genetic information as an obstacle or an opportunity for choice.
Imagine you are in your 20s and in love. Your father has Huntington’s disease and there is a 50 percent chance that you also have it. This disease will not affect your life for many years and you could pass it on to your children well before any signs of the disease are apparent. Should you have your DNA tested? Who should you tell about this? Your partner? Your family? Your employer? Your insurance company? If you want to have children, do you screen every embryo you conceive? Are you willing to have several abortions if the embryos have the gene for Huntington’s?
Very few of us are at any risk for Huntington’s disease, a deadly condition that kills people in their 40s and has no cure. But more and more, we are learning of genetic components to various serious health conditions. Huntington’s also offers, in one sense, a simple set of decisions. If you have the gene, you will have the disease. In contrast, for most other inherited diseases, a genetic counselor can only tell you about probabilities: there is a 70 percent chance, or a 20 percent chance that you (or your child) have this condition. Then it is up to you to decide what risks you are willing to take and, if you are pregnant, whether you decide to have an abortion based on that uncertainty. In the future, these decisions may involve a willingness to genetically modify the embryo that you plan to carry.
Caring for One Another
Quaker clearness committees are a wonderful tool for supporting individuals facing major life decisions, a tool very appropriate for many of the questions posed by modern science. These questions are both extremely complex and intensely personal, making broadly defined answers inadequate.
Genetic science challenges a basic aspect of care and respect for one another, the question of what is "normal" for human beings. Many people define deafness as a "disability," yet many deaf people have created their own language and a lively culture, which is threatened by efforts to eliminate all disability. Who gets to define what is "normal," and how do such decisions marginalize parts of humanity? This question seems to fall into two broad areas, that of disabilities defined by our culture, such as blindness, and disabilities with severe implications for pain, such as cystic fibrosis.
In the first instance, if in vitro fertilization (IVF) is used to screen for "disabilities," and we select an embryo without obvious "defects," that is, without any allele that causes a tendency toward alcohol dependence, or causes a child to be unusually short, what are we saying to children who have these traits? Is our unintended message to the disabled community that, "if we could, we would live in a world where you do not exist"?
At the same time, all parents want the best for their children. And they most certainly do not want to see them suffer. Is it right to bring children into the world when we know they will suffer from a painful and crippling disease? Various nervous disorders have a strong genetic component. If the process of IVF or genetic modification can ensure the birth of a healthy child, is that not what we want? But then, what responsibility do we have for the embryos that are not implanted in an IVF procedure? Again, who gets to determine what is suffering? Is the rejection a child may experience from being "too short," or having the "wrong" skin color, a form of suffering? Where is the line? How do we as a community help individuals make such decisions as they become more and more a reality? What is our responsibility as advocates for the disabled and for minorities in regard to public policy in this area?
As Friends, we speak to the sacredness of all life and the Divine Spark in each soul. California’s Proposition 71 raised this question when voters agreed to allocate $3 billion to embryonic stem cell research. Such cells are derived from fertilized human eggs, which in their first few weeks are undifferentiated—each embryonic stem cell has the potential to become brain tissue, bone, or any other part of the human body. Are stem cells just that, tissue that can be used for research? Or does their potential to become a full human being mean that they should not be used for such purposes, even if research might lead to cures for intractable diseases? Many Friends seem to think that such research is acceptable, but we have rarely discussed these questions in a faith context.
Another obvious potential impact is in our public schools. Today our schools provide a wide range of services for children who do not easily fit into the mainstream classroom. Such children are born into every level of society, thus there is a general will to help them and many parents to advocate for them. If genetic modification becomes a reality—and, given our system, most available to those able to pay for it—will there be increasing pressure to end these often very expensive services?
Genetic technology is very expensive and likely to be available based on the ability to pay. As such, it represents a huge diversion of resources away from basic needs and the simple health measures that can make life better for millions of people. Our health care system is currently under attack from many directions: large numbers of people are not covered by insurance; and there is increasing evidence that U.S. citizens, even the wealthy, are not cared for as well as in other industrialized countries. Given the pressure for increasingly sophisticated and expensive medical approaches, such as those offered by genetic technology, we should be motivated to seek ways of providing equitable access to care and attention to basic needs. Yet, as a former scientific researcher, I am not willing to forego the possibilities for ending some terrible diseases offered by DNA research.
There are many other dimensions of this field that might merit public policy considerations. The entire area of genetic screening expands concerns around who gets to request DNA tests and who gets to know the results. Informed consent for testing, research, and genetic modification is potentially complex and sensitive. Patent law is already being stretched as individual scientists and institutions have begun to claim patents for genes, stem cells and tissues, for methods of testing, and much else. In addition, the entire field is fraught with the potential for abuse, including the buying and selling of human eggs. Thus, this is an area that deserves careful reflection from people across the political spectrum as to appropriate boundaries for the scope and use of these technologies.
A Spiritual Perspective
This short article just touches on the surface of this topic. We are only slowly as a nation becoming aware of the importance of addressing the ethical and moral issues raised by what has been to date largely an exciting area of research and public policy somewhat reminiscent of science fiction.
Some of us face personal choices today, knowing that our family carries certain genes, and we agonize over what we want to know for ourselves or what this means for our children. Such questions will become more frequent for our children and grandchildren as more genes are identified and linked with specific conditions and as technology allows humans to modify plants and animals and, potentially, actively shape humanity. Various participants in our small group were convinced that as science makes us capable of more and more, human cloning will become a reality, if only on the black market.
The Friends who gathered in Portland last spring found some easy agreement: that expensive genetic technology will tend to further skew our inequitable health system; that science, as a tool, doesn’t tell us what should be; and that reliance on listening for the Spirit brings hope, conscience, and the perspective of the long term to bear on these matters. We are much more than our genes. The time was too short to resolve many of the issues raised in this article, and others, such as the tension between our sense that these are personal decisions that should not be preempted by the state and the conviction that genetic modification and abortion in order to create the "more perfect child" are a distortion of our humanity. Creation of "designer genes" pushes children as a commodity rather than as beloved.
We also agreed that humans have a tendency toward arrogance, assuming that we can know the consequences and long-term ramifications of our actions. We as Friends believe that one of the most important approaches we can bring to this discussion is an attitude of humility and the caution that our genes only tell us part of the story of our health and physical well-being.
We spoke of an ethical approach grounded in compassion and awareness of the uniqueness of each individual and each family, even as we felt that these issues are also the concern of the community. When we look at genetic technology through the eyes of a spiritual community, we have a responsibility to reflect and act out of love rather than to respond from fear. Sorting out the difference may take thought and reflection. I hope that more Friends will take the time to become educated and discuss with one another the implications for our lives arising from this science.
Religion and Science: Historical and Contemporary Issues, by Ian G. Barbour
Inventing Heaven? Quakers Confront the Challenges of Genetic Engineering, edited by Amber Carroll and Chris Skidmore
Unprecedented Choices: Religious Ethics at the Frontiers of Genetic Science, by Audrey R. Chapman
Playing God? Genetic Determinism and Human Freedom, by Ted Peters
Playing in the Presence: Genetics, Ethics and Spiritality, by Jackie Leach Scully