 Spring/Summer 2005 |
| Faculty Profile | |
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Genetic Engineering of Humans Roberta Berry talks about the ethical and public policy implications of genetic engineering of humans. Interviewed by Jane M. Sanders |
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ROBERTA BERRY is an associate professor of public policy and director of the Law, Science & Technology Program at the Georgia Institute of Technology.
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QUESTIONS:
1. What is the time frame within which genetic engineering of human beings could be technologically feasible and safe?
2. Why is it difficult to understand and address the policy and ethical issues surrounding genetic engineering of humans?
3. What are the key policy issues, and why do you anticipate they will be controversial?
4. What role will the U.S. Constitution play in the public and personal debate?
5. Why would parents want to genetically engineer children? Will they ever be comfortable with the risk?
6. Amidst the public policy debate, how are individuals likely to answer the ethical questions?
7. How do you believe the outcomes of other public policy debates – such as stem cell research – will affect this debate?
1. What is the time frame within which genetic engineering of human beings could be technologically feasible and safe?
Though genetic engineering of human beings may seem the stuff of science fiction, researchers have already created human artificial chromosomes for use in creating transgenic animals or in gene therapy administered to living humans. Some observers believe gene modules copied from known natural genes that seem to predispose humans to certain desirable features could be inserted on these synthetic chromosomes and introduced into a human ovum or zygote. These observers believe that research toward accomplishing safe genetic engineering of human beings in this way could get under way in the near future, while others maintain that such a step is still many decades away, if it ever could be feasible.
What’s happening, though, reminds me of the scenario of reproductive cloning with Dolly (the first cloned mammal). Many people thought it was way in the future. Then it happened. This field is filled with creative energy. At any time, there could be a breakthrough here or there. It could happen tomorrow. Some people speculate that human genetic engineering could proceed to the next research step as early as a decade from now, while others estimate it won’t happen before the next century. Nevertheless, the public policy debate about genetic engineering of humans is likely to intensify over the next 10 years.
2. Why is it difficult to understand and address the policy and ethical issues surrounding genetic engineering of humans?
One of the chief difficulties in understanding and addressing the policy and ethical issues surrounding genetic engineering of humans is the novelty of this. We’ve never before had the opportunity to revise our biological constitution in this way. So it’s difficult to find a framework for addressing this. We might be able to think about a new medical technique or a machine that is new to humans, but we’ve never encountered a novel technology to remake human beings as the subject matter of the technology. For all of us, whether we draw on a religious or secular ethical framework, this tests our ability to find policy guidance, let alone address it in a personal way.
For some it may be an easy personal choice. It will fit into other interventions they think are right or wrong. But then they must decide whether, as a matter of policy, they favor subsidizing or restricting the technology. For many, the novelty and complexity of it will make it hard to get a handle on what it involves – the possibility that we could revise genes and features of humans. Some will decide that the technology should be given completely free rein. Others will decide that this area is God’s domain, not a place where humans should be acting. But still, it’s difficult to know within a diverse community whether it’s appropriate to prohibit others from genetic engineering of humans. We have hit this question repeatedly with stem cell research and abortion.
My suspicion is that, as with other issues, many people will find themselves in the middle with a mixed set of beliefs, uncertain, but deeply concerned. All of us universally share the belief that these are very important, high-value issues. I suspect that many people won’t be certain about what’s right for themselves and others. They will struggle with the novelty and complexity of the issues personally and with regard to a policy framework for regulating the technology.
3. What are the key policy issues, and why do you anticipate they will be controversial?
The policy issues related to genetic engineering of humans will look familiar to us – they will look like the issues related to new medical procedures. They will be issues of risk and benefit, and the safety of human subjects in research. But then we will face the fact that defining the benefits of this technology is value-laden. People may disagree. It won’t be a simple matter to say, ‘It’s better to be taller rather than shorter, or it’s better to have a strong memory than to be forgetful.’ People will disagree about the relative importance of features and about the deeper questions of human relationships – how we treat each other. Should we devote ourselves to conscious efforts to design people according to a set of criteria for superiority? What is a superior human being? We’ll draw upon past experience with eugenics and treatment of people with disabilities and with various ethnic affiliations. Is there any human who can know and say that certain qualities are superior?
To address these questions, we’ll have to sort out the health and well being issues from the enhancement issues. All people want to pursue more fully what they value in their lives. Eliminating disease will not be as controversial as genetic engineering to design a superior human being. We’ll have to separate therapeutic engineering from enhancement, and the line between them can be very murky.
How we define benefits brings another set of questions that don’t fit into the standard medical risk/benefit analysis. It has to do with our notion of how we treat each other within the family and community. Is it appropriate to intervene with one’s child in this way to tailor the future child to be one way or another? These questions have to do with the rich fabric of our understanding of what it means to be part of a family, that we extend love regardless of the features people have.
There will be discussions of equality and how to treat each other in a community. What do we mean when we say we value equality in a community? Should we make everyone the same in capabilities or are all humans equal and entitled to dignity and respect because they’re human? These are issues about how humans regard each other, and they’re all tough to fit into a risk/benefit assessment.
4. What role will the U.S. Constitution play in the public and personal debate?
There are two senses in which the U.S. Constitution may play a role in the public policy debate about genetic engineering of humans. For one, there may be those who want to have access to the technology and likely will make claims under substantive due process if there are efforts to restrict or prohibit access. One way to do this will be to invoke the Constitution in claims by individuals against those trying to regulate the technology. That’s a use of the Constitution to challenge the validity of regulation, such as in cases about regulation of abortion by state statutes. So there could be constitutional arguments raised when policy discussions focus on a regulatory framework. Those discussions would be informed by the current state of constitutional law with respect to the cluster of liberties regarding procreation and parenting that fall under due process jurisprudence.
Another role for the Constitution is as a resource in response to the problems of novelty and complexity. One of the ethical and policy resources we have is to say, ‘OK, we disagree because we’re a diverse society, yet we live in peace.’ We accept the fact that we will disagree, yet we in the United States share a common political heritage tied to the Constitution. There is a set of norms and values embedded in it that are foundational, even if we disagree about how they’re applied.
We agree on a commitment to our shared welfare. There’s no monarch telling us what to do to fulfill the monarch’s dreams. We the people give certain powers to the state to regulate for our mutual welfare. It’s in the preamble. It’s part of our ongoing experience, such as in the constant dialogue on healthcare and other reforms. Our government is of the people for the purpose of promoting our welfare. We can debate what welfare means, but we all accept the foundational premise about what government in the United States and other democracies is about.
With respect to this and other norms, I look at the shared foundational norms, or values, in the Constitution and how they potentially influence the ultimate policy formation and regulatory scheme in both senses – as a matter of constitutional law and as a resource for public dialogue. We do this with the debate we keep having about what liberty means and in the equality debate such as with affirmative action in educational settings and with gender roles in the military and elsewhere. We have these dialogues on the general welfare and the promotion of science and the useful arts when they start to threaten other values.
We have this store of policy discussion and working things out surrounding certain issues. We can look to these discussions because they all draw upon these norms, which will be evoked by the genetic engineering debate. Then we can start to chip away at the novelty challenge, make it a more familiar problem. Genetic engineering of humans raises questions about the general welfare, procreative liberty, equality, the advancement of science and the useful arts for human benefit – and when it’s for our benefit and when it’s no longer a benefit because it violates other values we hold dear. We will discuss these over time and over our shared history together. Then we’ll have a shared framework for a policy debate. It will shed light on this novel and complex problem and tell us what we should be debating.
The risk/benefit framework doesn’t fully get a grip on this issue. It’s frustrating. It’s an inadequate framework because this issue is so novel and complex. The constitutional framework is generally shared, and we have stored experience with it in addressing other problems. It will shed light on this novel problem and help us get a grip on it – at least tell us what we should argue about.
That is step one to a set of good resolutions. With this issue, we won’t reach just one conclusion after a three-month debate. This is going to be an ongoing debate for our lifetimes and the lifetimes of our children, who likely will be the first generation to face the prospect of deciding whether we want to use this technology. Every generation forward will face this. It won’t go away. We’ll have to deal with whether or how it’s used and refined. So it will be an ongoing debate. We need to face the debate and find a handle on it. We need to make a first tentative step toward coping with it because the prospect is so imminent. It’s likely that science and technology will force this upon us. We must prepare ourselves to address it.
5. Why would parents want to genetically engineer children? Will they ever be comfortable with the risk?
Those who are working on the technology for genetic engineering of humans think the risk will ultimately be minimal, especially when compared to the potential benefits. Parents with a genetically influenced disease may find the risk/benefit tradeoff acceptable. They could, through in-vitro fertilization, engage in genetic engineering to ensure their future child won’t suffer from the disease.
But there are those who will say, ‘If you’re willing to do that, why not engage in genetic testing of pre-embryos to determine whether they might get the genetic disease? Then discard those that are predisposed.’ In this case, the therapeutic use of genetic engineering is not that appealing. I’m not sure if there will be a subset of individuals who will not discard embryos, but will engage in a genetic engineering procedure when the risk/benefit tradeoff seems OK.
Another group of people who are more likely to address the risk/benefit tradeoff are those that subscribe to arguments that we should be attempting to improve our biological endowment in the same way we have with other attempts to improve ourselves. For example, pregnant women eat a good diet, go to the doctor and take vitamins. Mothers want good nutrition for their children, and stimulation and a good education. These are all efforts aimed at improving future human beings. Parents want the best possible development of their child’s natural endowment. We’ve not frowned upon this; we’ve supported this. We have government policies to encourage and subsidize things like education, and maternal and infant support. Perhaps we need more of these programs.
So, the argument goes, if I find a technology that’s just as reliable, say, as inoculation, then why shouldn’t I take the next step and fiddle with the genetic endowment that my child will have and provide a greater prospect of improving the capabilities and health of the child? This argument claims that genetic engineering belongs on the continuum that starts with providing better health and education. Whatever the risks, the benefits exceed them.
For some, there may come a time when the government should subsidize universal genetic engineering for all. This carries us back to the problem of defining criteria for the best possible genetic endowment. We’re also potentially into the territory of having sameness instead of the diversity we have now. Are we then into a program of eugenics instead of a program like maternal health and education?
It’s likely that as the arguments develop, they will carry us far afield from the standard risk/benefit analysis and into the realm of nurturing versus engineering and of preserving or redesigning our species. The benefits will have to do with the conception of humans and the way they ought to be to flourish and enjoy a rewarding life.
6. Amidst the public policy debate, how are individuals likely to answer the ethical questions?
Individuals will struggle to fit this issue within their own philosophical and religious or secular framework. It’s not as if everyone will – when they consult religious authority or an ethical framework – find ready answers about the choices they should make. They will look there for guidance and help. A lot of individuals will be engaged in this.
That struggle will proceed in parallel and intersect and be influenced by the policy debate, such as it has in the abortion debate. People are aware of the larger policy debate. We as ethical and religious thinkers always look to one another and/or to secular or religious texts for help. We listen to each other on personal and policy decisions. We learn together. We search to find answers together.
That’s the way humans arrive at ethical and policy knowledge. We are social beings. Most of the issues we struggle with really have to do with the fact that we’re social beings. This is about our children and future members of the political community. It’s not surprising that it will be a matter for all of us working together to figure these issues out.
The personal and the policy decisions won’t be isolated tracks of thinking. They will be interactive, informing each other as the community struggles to figure it out.
7. How do you believe the outcomes of other public policy debates – such as stem cell research – will affect this debate?
My hope is that we will draw on the debates about issues like stem cell research to inform the debate surrounding this issue and others. There will be a positive interaction in the sense that we’re all trying to find the lines and definitions for our personal and policy lives for the best resolution for now in light of the shared norms in our political community and our personal beliefs.
But I worry that we will not have an open and reflective debate. You have people with firm beliefs that will retreat into camps separated from each other. People will be digging in their heels and making arguments in ways that don’t engage the other camp. I worry that many bioethical policy debates will happen this way.
There are likely to be a lot of people in the middle with camps on either side. Those camps will talk past those in the middle, who feel they can’t get a handle on this issue. They have mixed views about it.
I hope we can debate it within the shared foundational norms in our Constitution and find common ground for the framework of the debate. I’d like to see a wide variety of people thinking about this to arrive at a resolution. I don’t want this to evolve into isolated encampments in which people hold their own views and won’t listen to others.
To some extent, this is the case in the stem cell and abortion debates. We haven’t been as successful as we might have hoped in communicating our concerns in an understandable way across a diverse community. We need to engage the vast middle with beliefs that cut across the camps at each end. That may be the way these debates have to evolve. The only way they proceed may be by having intense encampments set the terms of the debate from their perspectives. Then we’ll have to muddle through together to find a resolution.
I don’t suggest that I have a prescription for this problem. Life is not so tidy that we can just sit down at a table and come to a resolution. Procreation is a widely engaged in human activity. These are issues of wide and deep concern to all, and I hope we’ll find ways to talk about them to proceed to good resolutions involving a genuine engagement of the issues.
I hope it won’t be resolved by who gets how many party-line votes in Congress or appointments to the Supreme Court. I’d like to see good policy resolutions that are at least satisfactory for now, rather than resolutions by the power of politics or who figures out the best procedure to get the upper hand. The resolutions may not be perfect, but they could be satisfactory for now and reflect a broad engagement of people concerned.
For more information, contact Roberta Berry at 404-385-1704 or roberta.berry@pubpolicy.gatech.edu
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2005