Text Size:SmallerLarger

'Reprogenetics': Hype, Phobia and Choice

An unreserved advocate of new reproductive technologies argues his case.

Policy decisions we today are making—for instance, what to 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]

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.

Against the background of scientific advance, public discussion and the work of the Council and other bodies, Erik Parens and Lori 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 “wellbeing” (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.

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.

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 Blackfan 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.


endnotes
  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.

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.

back to top