'Reprogenetics': hype, phobia and choice: an unreserved advocate of new reproductive technologies argues his case.

"POLICY DECISIONS WE TODAY are making--for instance, what do about human cloning or sex selection and genetic selection of embryos, or whether to get comfortable prescribing psychotropic drugs to 3-year-olds, or how vigorously to pursue research into the biology of senescence--will shape the world of the future for people who will not have chosen to live under its utopia-seeking possibilities." (1)

For some, this opinion from the President's Council on Bioethics is an exciting statement of future possibilities. For others, amongst whom we should include Leon Kass, the chair of the Council, it represents a frightening glimpse into the Brave New World that awaits us if we do not use the power of decision to rein in "the technological spirit." (2)

Against the background of scientific advance, public discussion and the work of the Council and other bodies, Erik Parens and Loft P. Knowles, in a recent supplement to the Hastings Center Report, "Reprogenetics and Public Policy: Reflections and Recommendations," call for a new oversight structure to regulate bioscience and biotechnology in America, because "the future of reprogenetic practice is too important to be decided solely by the market." (3) More explicitly perhaps than previous American commentators, they call for a form of regulation closely analogous to that practiced in the United Kingdom by the Human Fertilisation and Embryology Authority (HFEA). This would allow consideration of both safety and "well-being" (in the UK, "welfare") issues.

I am skeptical--both of the arguments made and the solutions proposed by Parens and Knowles. In a reversal of traditional conservative themes, but with similar effect, the future rather than the past now weighs down on the present, casting humane technologies and parental motivations in a negative light. Writing from the UK, I am very much aware of the perceived shortcomings of the American regulatory structure. But before US policy makers take a ready-made solution off the UK's shelf, they should consider some of the limitations and restrictions it brings, as well as the difficulties it is running into presently.

ENDLESS POSSIBILITIES

For those of us who believe that embryos do not have rights or interests that could interfere with selection prior to birth, the currently available reproductive and genetic technologies represent a very positive development. They have allowed many infertile couples to have children who are related to them. They have allowed women at risk of having a child with a potentially dangerous genetic condition to achieve what others almost now take for granted--a child with every chance of a healthy and full life. They have given older women a higher chance of a successful and healthy pregnancy. More recently they have made it possible to have a child who will very likely be a tissue match for a seriously ill sibling, an event that is generally hailed as a wonderful thing when it occurs by chance following conception in the traditional manner.

However, this is not the reality, we are encouraged to picture. What I have presented as very reasonable steps taken by very reasonable people in difficult circumstances are, according to Parens and Knowles, products of a "market" in "reprogenetics." Worse, that market allows and encourages parents to "shape their children," turning them into commodities made to order.

Rather like Kass, Francis Fukuyama, the famous author and another member of the President's Council, has developed a style of argument and rhetoric that has similarities with but far surpasses that employed by more moderate voices such as Parens and Knowles. He tells us that the real threat "lies in the possibilities of human cloning, 'designer babies'--eugenic selection for intelligence, sex and personality--and eventually, the end of the human species as such." (4) Of course this road to hell is paved with good intentions--the good intentions of reasonable people pursuing apparently reasonable goals, such as visiting a Chicago clinic to undergo IVF and tissue-typing to help a sick child.

As a campaigning device, Fukuyama's first boo-word in his frightening list, cloning, has proved most fruitful. He is perfectly open about its usefulness from one point of view: "There is no strong constituency in favor of cloning in any country, and considerable international consensus already exists in opposition to the procedure. Cloning therefore represents an important strategic opportunity to demonstrate the possibility of political control over biotechnology." (5) As he rightly points out, public opinion, insofar as it has been accurately gauged on these issues, is supportive of new therapies, but worried about some of the possible means--cloning in particular. Cloning has also provided a point of connection between in-principle opponents of all embryo research and some feminist, disability rights and environmentalist campaigners, an alliance that has been partially formalized in the US.

I do not wish to avoid difficult issues, such as cloning or enhancement, nor sidestep discussion of whether and how far we seek to shape our children, for better or worse, and the role played in this by social and economic pressures. In the space allowed by this article, I can only assert that the significance attributed to nearly all the novel forms of human genetic and reproductive technologies highlighted by Fukuyama and others outstrips the likely short- to medium-term developments. We must not let hype, nor what the magazine Nature accurately characterized as "a determination to confront the research agenda not only with ethical discussion but also with irrational fears and pessimistic foreboding," (6) dictate policy or distract us from the real benefits that exist now and are likely to exist soon.

We must also maintain a sense of proportion about setbacks and possible harms. With reproductive cloning for example, many expect it to happen somewhere, probably in the not-too-distant future. If done prematurely, we may well see children born with illnesses and developmental problems. Very few people want to see this happen. But if it does what we will have is a sick child, not a Brave New World.

QUESTIONING THE REGULATORY IMPULSE

The Nature editorial view just mentioned is of course in keeping with a UK perspective on certain things American. Equally, we could consider criticism of the unregulated American private sector; a narrative that features "cowboy" operators taking risks with the future to satisfy their egos and bank balances. In this way we would confirm the benefits of the reasonable approach taken to these issues in the UK, the very thing that recommends it to some American commentators.

However, from the point of view of patients wanting access to new techniques, the UK system has its drawbacks. The law, for all its appearance of being permissive, is founded on a restrictive logic: research and treatments are forbidden unless they fall within certain categories. Further, in addition to technical and safety considerations which the UK shares with the US, an additional consideration, the welfare of the child to be born, is also considered as a part of the UK vetting of proposed uses of IVF and allied techniques, whether they are carried out in the public or private sector.

Originally, and as stated in the Act of Parliament that established the regulatory framework in the UK, the welfare of the child was linked to the importance of a man and a woman rearing a child together. This was widely seen as a move to mollify Parliamentary critics who did not want to see single women and, heaven forbid, lesbian couples, using the technology. But as time has gone by, and the academic community has studied the issue, it has become clear that people who have to struggle to have children, whatever their marital status or sexual orientation, are as or more thoughtful about child rearing than the average parent, and their children are as or more likely to thrive in every way. Clinics, more rapidly in some cases than in others, have adjusted to this reality, and liberalized their practices. But the principle remains on the statute books, and now provides a catchall means to question the application of new techniques.

Specifically, the UK regulators seem to have alighted upon the idea of raising theoretical or possible harms, on the basis of little or no evidence, as a mechanism to regulate and restrict access to innovative application of reproductive and genetic technologies.

A "DESIGNER BABY"

Charlie Whitaker suffers from a rare blood disorder called Diamond Black-fan anemia. Currently he has to undergo regular blood transfusions and painful injections. His life expectancy is much reduced. A very promising treatment is a transfusion of blood stem cells from the umbilical cord, which is rich in them. But for that to work it is also necessary that the cord be from a baby born with a closely matched tissue type. Jamie was conceived in such a way that there was a very good chance--98 percent in fact--that he would provide such a match for his ill brother. This was achieved through fertilization, genetic testing and selection of the embryos prior to the beginning of pregnancy. This is a combination of several techniques and issues guaranteed to lead to headlines in the UK about "designer babies." But for the boys' father, what he and his wife did was very simple: "we have always wanted four children, so we just combined having more with helping Charlie." (7)

The HFEA didn't see it that way, and it was only thanks to the availability of the treatment in the US that Jamie was born. Suzi Leather, chair of the HFEA, argues that the long-term risks of preimplantation genetic diagnosis are unknown and it is therefore only appropriate to limit its use: "If there are benefits for the child to be created from the [tested] embryo, for instance, to avoid a significant risk of a serious disease, then I think the balance of potential harm and potential good falls in a different place than if you are simply [testing] an embryo for the benefit of another person." Leather expressed concern not only about long term physical harms that might result from the process of testing, but also emotional harms: "We don't know what the social and emotional consequences of being a so-called 'savior sibling' will be. It seems to me that in this area of considerable uncertainty, where there is a possibility of theoretical risk, that we should adopt a precautionary approach." (8)

Setting aside what, admittedly, can become something of an angels-on-a-pinhead discussion about whether it is legitimate to raise the issue of the harm to the second child since he would not have been born unless he was selected in the way he was, this is still a pretty breathtaking balancing act the UK regulators want us to take their side on. If we take it as given that the treatment has a good chance of saving a life (this is the view of many experts, and is borne out by limited experience so far, although it is questioned by others, such as fertility expert Robert Winston), we are supposed to forget about this because of possible harm to the new child. And make no mistake: it is a possible harm, for that is why the cowardly precautionary approach is invoked rather than clear data or theory. Indeed, to be frank, it is difficult to see how this use of the precautionary approach is any better than the "determination to confront the research agenda not only with ethical discussion but also with irrational fears and pessimistic foreboding," that Nature criticized Kass for.

The restrictive implications of the precautionary approach are fairly clear. What is perhaps less clear is that it also risks undermining the coherence of regulation, or at least its intellectual coherence. In a more recent announcement, concerning the use of novel "sperm-sorting" techniques to aid sex selection, the authority partly justified a restrictive approach in a similar way, while this time acknowledging that there really was little or no evidence of any risk of physical or psychological harm. So in the end it buttressed an argument based on caution with the observation that people don't like it and think that it might carry risks, particularly to the psychological well-being of any children born. Indeed, much of the HFEA's report, "Sex Selection: Options for Regulation," is taken up with outlining the results of consultations. This is analogous to raising the "yuck factor" in discussions that took place in the early 1990s about the possibility of using eggs from aborted fetuses. It might provide a pragmatic justification, but it is not an ethical or any other kind of principled argument in itself.

There are undoubtedly many problems with the American system of regulation, the biggest of all of course being the ban on the use of public funds for whole areas of research and treatment. It might also be an idealization of the American system to highlight its respect for patients' private choices and its use of regulatory restrictions only in the case of known harms. But idealization or not, such a system is or would be an intellectually coherent system of regulation, and one which would allow families and patients to continue to benefit from new applications of reproductive and genetic technologies as they become available.

NOTES

(1) President's Council on Bioethics, "Beyond Therapy: Biotechnology and the Pursuit of Happiness," 2003, p9.

(2) Ibid. p2.

(3) Erik Parens and Lori P. Knowles, "Reprogenetics and Public Policy, Reflections and Recommendations," a supplement to Hastings Center Report, July-August 2003, S3.

(4) Francis Fukuyama, "How to Regulate Science," Public Interest, Winter 2002.

(5) Ibid.

(6) Nature, "Morality, prejudice and cloning," January 24, 2002.

(7) David Derbyshire, "'Designer baby' gives hope to his ill brother," Daily Telegraph (UK), June 20, 2003.

(8) Jeremy Laurance, "Blood brothers: how newly born Jamie offers hope to Charlie," Independent (UK), June 20, 2003.

ROUNDTABLE

RESPONSES TO "REPROGENETICS": HYPE, PHOBIA AND CHOICE

Professor Barbara Katz Rothman

Dr. Neil Levy

Professor Thomas Shannon

Professor Ronald Cole-Turner

Dr. Kathy Hudson

What if I just say "A pox on both your houses"?

Barbara Katz Rothman

BARBARA KATZ ROTHMAN is Professor of Sociology at the City University of New York. Her most recent book on matters genetic is The Book of Life (Beacon, 2001).

I AGREE THAT A RESTRICTIVE, PATERnalistic approach is not a good idea. The American in me (yes, even in me) bristles against British-style restriction on my choices in matters familial and medical. On the other hand, a free market in babies, baby-making kits, treatments, genes and embryos, and drugs and surgeries: that's not a good idea either.

Countries all over the world are struggling with these issues. The Germans, with their acute and appropriate sense of the dangers of eugenics, bring their sensibilities to the table. The Australians sometimes seem to out-American the Americans on reprotech. The Japanese, gender struggles locked a few decades back, bring theirs. The Dutch are often sensible. Shall we ask them?

Matters of procreation are deeply embedded in culture, as well as politics. Different countries are going to have to work out approaches to these

technologies that serve their own needs, and there probably is no one-size-fits-all approach to regulation. That said, and globalization being what it is, both the researchers themselves and the very wealthy will do what they want to do. This is already well documented in procreative services: the Japanese ban surrogacy arrangements; American in-flight magazines carry surrogacy service ads for Japanese businessmen. As Gillott points out, Charlie Whitaker's parents weren't stopped by British law: they too just flew to the US.

I wish I could remember who said that the US doesn't have a culture, it has an economy. We value choice, but only in the narrow market sense: any consumer with the money can buy virtually anything. That's how we handle all things medical--and many other things as well. One of the most powerful images of the civil rights movement was the black customer, dollar in hand, denied service at a lunch counter. The much more difficult problem, that blacks in the South rarely had the dollar to spend, was not a civil rights problem and perhaps, as American policy works, not a problem at all. Black babies continue to sicken and die in America and around the world, while the scarcity of adoptable white (or "offwhite") babies drives the reprotech business. The choices of some (wealthy white) infertile people is a matter of some import; the health, needs, even lives of other (poorer and darker, fertile or infertile) people is obviously not.

People are going to be able to develop these technologies and people are going to be able to buy them. Of course, in the interests of equity, if we cannot deny any and all procreative services to the rich, then we should not deny them to the poor.

Yet these technologies do have costs--financial, psychological, social and political. To note just a few Gillott let glide by:

* medicalization: people turn into patients and decisions about family become medical;

* treatments go looking for markets: each new technology gets used for more and more kinds of cases;

* women are pressured to use dangerous technologies to preserve genetic paternity (allowing many infertile couples to have children who are related to them);

* older women have a higher chance of a successful and healthy pregnancy--sometimes using eggs purchased from poorer younger women with risks to their health;

* the meaning of "related" narrows to genetics and maybe especially paternity as "surrogacy" arrangements and egg donations are commercialized.

Gillott would have us think that any objections we raise are either phobic or hype-driven. Start with tales of a dying child, and any and all technologies seem appropriate. But we are not dealing only with dying children. Right now, this very minute, people are using these technologies to avoid sperm donation; to choose sex. The market will grow: the search is on for the fat gene, the gay gene and the hyperactivity gene.

Can a thoughtful, critical, careful thinker have no legitimate concerns?

Let Life Shape Personality, Not Genetics

Neil Levy

DR. NEIL LEVY is a research fellow at the Centre for Applied Philosophy and Public Ethics at the University of Melbourne, Australia. He is the author of four books and many articles on ethical theory, applied ethics and other topics in philosophy.

IF YOU WANT TO CREATE A CHILD IN the ordinary way, no one will stop you. No matter what kind of person you are, no matter how ill-equipped you might be to take care of a child, natural reproduction is your right. But if you want to use technological means, your motives are scrutinized and the regulatory hurdles you must clear are high. Why do we treat these cases so differently?

As John Gillott urges, very often the regulatory impulse seems to be motivated by nothing more than irrational fears and a knee-jerk rejection of unfamiliar technologies. But the fact that the current system of regulation is ill-motivated does not by itself give us reason to advocate a libertarian free-for-all. There are many problems with markets. Most obviously, they inevitably raise questions of distributive justice, by ensuring that access to goods is stratified by wealth. In this brief essay, however, I want to concentrate upon a different problem raised by our new technologies.

Gillott focuses on claims that reproductive technologies are intrinsically objectionable. As he argues, there is little or no evidence for these claims. However, intrinsic properties are only a part of the moral picture. We also need to consider the context in which these technologies are adopted.

The past three decades have seen a revival of biological modes of thinking about individuals and society. More and more, people are looking to their "genes" for explanations and predictions not only of physiological diseases, but also personality traits, dispositions toward or away from morality, sexual behavior and intelligence. A constant barrage of headlines tells us that laziness, obesity, criminality, schizophrenia and almost every other human trait is to be explained not by human choice or social structures, but by strands of DNA. But, though there is no doubt that the developmental resources which underlie heredity have something to do with all these traits, it is very likely that the extent to which they are "in the genes" is wildly exaggerated by evolutionary psychologists, socio-biologists and those other scientists who dominate media discussions of these issues.

The belief that genes determine human behavior is not merely false. As a number of philosophers and biologists have argued, it is also dangerous. It encourages us to see inequality, low educational achievement, alcoholism and a host of other social ills as irremediable. We cannot combat sexism or racism, we are told: they are in the genes (the more sophisticated argue that we could combat these ills, but that the costs of doing so would inevitably be high). We see today a new brand of social conservatism, one backed up by what it takes to be cutting edge science.

It is important to combat this reactionary politics, as well as the bad science that underlies it. Now, there is no intrinsic link between, say, cloning and these views. But in the current climate, allowing unfettered access to all the reproductive technologies is dangerous. Unless you believe that genetics determines personal identity, there are in fact no good reasons to clone. (The only coherent argument is that cloning would allow the otherwise infertile to have children who are biologically related to them. But I have never seen a good argument as to why biological relatedness matters). The technologies which would allow us to prevent the single-gene diseases, like cystic fibrosis, and to filter out BRAC1 which is responsible for many breast cancers are an unqualified good. But we ought to avoid promoting technologies that supposedly allow parents to shape the personalities of their children. It is not so much the harm to the child which ought to concern us, but the indirect political costs which we all risk paying.

The Genetic Fallacy: Perfect Genes Do Not Eliminate Schmucks

Thomas Shannon

THOMAS A. SHANNON is Professor of Religion and Social Ethics in the Department of Humanities and Arts of Worcester Polytechnic Institute. He is the co-author of the recently published The New Genetic Medicine: Theological and Ethical Reflections (Rowman & Littlefield, 2003)

JOHN GILLOTT PRESENTS INTERESTing and thoughtful perspectives on the use of genetics. Cross-cultural comments, particularly when coming from a country with a structure in place to monitor genetic and other interventions, is always useful. But the reverse is also true and I think there are some cultural elements from the US that he misses, though there are allusions to some of them.

First, I think any discussion of medicine of any kind in the US needs to take into serious account the growing cultural pluralism here. As a country of immigrants who are no longer as interested in assimilation as previous ones were, more and more cultural values and preferences are parts of mainstream discussions of medicine. Couple that with the still near monopoly that the value of autonomy or rhetoric of choice has in our culture and you have difficulty in coming to a discussion about medicine with any assumptions of a commonality of values or interests. Additionally, many values and choices are highly politicized in this country. Cultural pluralism, autonomy and politicized values present a nightmare in terms of many family discussions, to say nothing of trying to devise public policy.

Second, I think Gillott vastly under-estimates the place of the market in the US. While it has been a truism for a long time that research follows money, it is now also becoming clear that medical practice does too. One can look, first, to the marketing of cosmetic and dental surgery for men and women, and some teens. The market for satisfying desire is strong here. Second, look to assisted reproduction. Clinics advertise a ready supply of donors who are reimbursed with several thousands of dollars for their services. And there is a clear market outside of clinics to help people fulfill their reproductive desires. Third, observe the current television advertisements for drugs. We are not told what they are for, but that we might need them and we should ask our physician about them. We genuinely think that money will solve problems and the market is a primary way to do this. The limit of our desires is the limit of our credit line--and sometimes not always that.

Third, the rhetoric of genetic medicine is inflated, to say the least. The assumption, from listening to many researchers, is that genetic interventions and cures and/or modifications are right around the corner. I term this "gene-hype" and it serves to whet the market appetite and to generate funds for research. This rhetoric is coupled with the rhetoric of genetic determinism and leads many to think that genes control everything. This gives rise to what I call the genetic fallacy: you might get a perfect set of genes, but you still might get a schmuck.

I do not intend this to be understood (totally) as an antigenetics or antiresearch screed. I do, however, want to bring to the fore cultural realities that drive our debates, our medical practices and our research. We live in a culture in which many diseases have their celebrity spokespersons, some of whom have the disease, but others of whom are paid to gain attention for the cause. We need to cool the rhetoric while conducting appropriate, publicly funded research so we can first figure out what we might be able to do. Then we need to figure out how to pay for it and do it. And, in this debate, focusing on need rather than desire or fantasy will be a critical, and helpful, move.

Trusting Common Sense

Ronald Cole-Turner

RONALD COLE-TURNER is the H. Parker Sharp Professor of Theology and Ethics at Pittsburgh Theological Seminary. Recent books include Beyond Cloning: Religion and the Remaking of Humanity (ed, 2001), and God and the Embryo: Religious Voices on Stem Cells and Cloning (ed. with Brent Waters, 2003).

ONE SUNDAY SEVERAL YEARS AGO, A geneticist friend and I were leading a discussion at church on reproductive genetics. This was back when we were first beginning to ask about the ethics of using preimplantation genetic diagnosis (PGD) to select among in vitro embryos for a suitable sibling donor to save the life of a dying child. My friend set up the case, explaining Fanconi anemia and describing medical alternatives, and then asked point blank: Is it right to use this technology to select an embryo free of this disease and suitable as a sibling donor?

In about 30 seconds, general agreement emerged. People spoke first to their Kantian worries that the second child might be regarded as a means to an end. But just as clearly, they could see that not only might the first child be helped, but that desiring to do so is a mark of good parenting, hardly indicative of parents who would use and then disregard or disrespect the second child. And most of all, they were clear that this is just not the sort of problem that government is good at solving.

I draw some comfort from their wisdom. It reminds me that, as much as technology runs ahead of common knowledge, common sense keeps pace.

Sure, there is much to fear. These new technologies, together with many old-fashioned ones, will no doubt provide ways for human beings to violate children, warp relationships, act out their delusions of control and seek to objectify or commodify the personhood of others. Some even see PGD as the gateway to designer babies, enhanced beyond our humanity.

These are serious concerns, to be sure, but from that alone it does not follow that government is either needed or well suited to rule on these matters, least of all in individual cases. Government has a role in standards of safety and perhaps in requiring that those who provide PGD state clearly what their ethics standards will he. But people also have a role in decisions about technology, and it is not clear to me that government adds much to their wisdom as patients or parents.

Furthermore, the abortion debate, which distorts nearly all things political, distorts the politics of embryos and PGD. In its wake, no moderate or sensible legislation seems possible. Too many members of Congress cannot support bills that limit some embryo research or selection without being accused of encouraging everything they do not ban.

So I offer two recommendations: First, I encourage all providers of PGD services to take the initiative, to create a common statement of ethical standards and publicly state their compliance. This would raise public confidence and provide a standard that keeps pace with changing technology.

Second, the rest of us--especially those of us who are most concerned about the misuses of these technologies--can go to work at the level of culture, religion and the media, pointing out the dangers and pointing toward the promise of a humane future.

The Vagaries of Government Regulation

Kathy Hudson

DR. KATHY HUDSON is the founder and Director of the Genetics and Public Policy Center at Johns Hopkins University in Washington, DC.

TODAY, THERE ARE SOME ONE MILLION people for whom the journey toward personhood began when a fertility specialist peering through a microscope carefully added sperm to egg in a glass petri dish. Paralleling the development and rapid growth in the use of IVF has been an explosion in scientists' understanding of the human genome and the ability to detect genetic alterations associated with disease and other inherited characteristics. Currently there are over 1,000 genetic tests and the number is growing.

The worlds of assisted reproduction and genetics converged with the advent of preimplantation genetic diagnosis (PGD), engendering a host of new scientific, social, ethical and political quandaries. The arrival of PGD, the genetic testing of embryos, has prompted many to consider not just the implications of this new genetic diagnostic tool but whether core concerns surrounding in vitro fertilization itself are, a quarter of a century later, really all that settled.

In the emergence of PGD, we have seen medical providers and scientists become deeply involved with the most profound and mysterious of human activities: creating life. This unprecedented intercession of technology into human reproduction is, for some, a deeply offensive act in which science literally subsumes the role of God. For others, it is science mercifully intervening to lift the anguish of genetic disease and infertility.

PGD is a powerful tool allowing parents to identify and select the genetic characteristics of their children. The fundamental societal question is whether and under what conditions to use PGD--the adverse consequences of proceeding too quickly versus the fear that we have much to lose by applying too much restraint. The challenge is to confront these tensions by arming ourselves with the knowledge about the technology itself--or the limits of that knowledge, as the case may be--and then considering the implications of various policy decisions that could affect its implementation.

This challenge is formidable in the United States where the policy debate has been framed largely by the extremes; the technology enthusiasts on one end and the conservative religious on the other. In some ways, that's not surprising. After all, we are talking about the most profound and mysterious of human activities: creating life.

Some commentators have suggested that we create an Americanized version of the Human Fertilisation and Embryology Authority to oversee and regulate genetic testing of embryos and other reproductive technologies. But importation faces significant if not insurmountable challenges. First, the HFEA is composed entirely of prochoice members--an untenable roster in the US. Second, the US has an abysmal track record of using government bodies to dictate or enforce ethical norms. Over the last several decades we have had a succession of governmental ethical advisory committees whose composition is changed, whose existence is eliminated, or whose findings are rejected or ignored with every change in administration. Finally, while an HFEA-like structure is seductive, it would in essence be passing the buck--asking yet another group of esteemed experts and scholars to opine for us where to draw the line: what technologies are permissible and for what purposes.

The solution, or at least part of the solution, is to broaden and deepen public discussion and engagement in these issues. Policies affecting how we have children are simply too important to be dictated by a process populated largely by people at the extremes.

Glossary of Terms

Assisted Reproductive Technology: Fertility treatments that involve a laboratory handling eggs or embryos, such as in vitro fertilization.

Biotechnology: The industrial use of living organisms or biological methods derived through basic research; examples range from genetic engineering to making cheese or bread.

Cell-Based Therapies: Treatment in which stem cells are induced to differentiate into the specific cell type required to repair damaged or depleted adult cell populations or tissues.

Cloning: The creation of an animal or person that derives its genes from a single other individual.

Embryonic Stem Cell: A cell from an embryo that has the potential to become a wide variety of specialized cell types.

Genetic Screening: Analyzing DNA to look for a genetic alteration that may indicate an increased risk for developing a specific disease or disorder.

Gene Therapy: Experimental treatment of a genetic disorder by replacing, supplementing or manipulating the expression of abnormal genes with normally functioning genes.

In Vitro Fertilization: An assisted reproduction technique in which fertilization is accomplished outside the body. (In vitro means "in glass.")

Preimplantation Genetic Diagnosis: A procedure used to decrease the chance of a particular genetic condition for which the fetus is specifically at risk by testing one cell removed from early embryos conceived by in vitro fertilization and transferring to the mother's uterus only those embryos determined not to have inherited the mutation in question.

Stem cells: Nonspecialized cells that have the capacity to self-renew and to differentiate and grow into any kind of cell.

Source: www.nih.gov

JOHN GILLOTT works at Genetic Interest Group, a UK group representing individuals and families affected by genetic disorders (www.gig.org.uk). The views expressed in this article are his own.