Every month in a small room in central London, I and other members of the Human Fertilisation and Embryology Authority (HFEA) make life-changing decisions that deal with the ethics, legality and treatment of in vitro fertilisation (IVF). These decisions can be agonising, even though, as the UK fertility regulator, we work within a strict set of laws. That’s not the way it happens in the USA, as the author of this book found out when a friend asked him to father her child by donating sperm and he decided to investigate the industry. His findings, he readily admits, ‘astonished’ him, revealing a fertility industry that is largely unregulated and often money-driven, and a thriving trade in human eggs. The book is a must-read for any patient considering going abroad to avoid UK regulations that may appear to curtail freedoms but in fact aim to protect patients’ safety and rights, and those of any offspring born through IVF.
Robert Klitzman is not himself an IVF clinician but a well-respected bioethicist and psychiatrist. He has gathered together the experiences of patients and providers in the USA, combining their testimony with analysis of available data from that country and elsewhere. The result is a disturbing indictment of practices in the USA, where, he says, the guidelines that do exist are rarely enforced, clinicians and egg providers are often market-driven and many fertility-related treatments are carried out without data collection or follow-through to evaluate risks and trends. There is, of course, good practice in the USA too, with stricter rules generally applied by clinics attached to hospitals and universities. But in this variable and fragile market, Klitzman concludes, patients appear to struggle to choose doctors and donors, fail to understand that success rates are low and find themselves unprepared for disappointment. This is a study not just of the facts but also of the wider medical, physical, emotional, cognitive, logistical and financial issues associated with IVF.
Techniques that enable parents to avoid passing on certain genes in order to safeguard future generations from genetic diseases are changing society, but in parts of the USA these same techniques are being used to influence the looks and intelligence of children, raising serious questions about whether we are witnessing the rise of a new form of eugenics. What’s more, according to Klitzman there is a ‘Wild West’ of unproven technology on offer that is costly but of no benefit. In the future, gene-editing technologies could allow further manipulation of the genes in embryos. Although not yet licensed or used in relation to humans, such advances bring further huge challenges. Our societies must try to balance both the potential benefits and the risks of such developments, in an age where the rich may be able to afford access to them but the poor cannot. We are, more than ever before, argues Klitzman, ‘directly shaping our own genetic evolution’. As science moves forward, he asks, are we entering an era where sex is for leisure and IVF is for creating the perfect child?
Although Klitzman’s focus is on the USA, this is a book for us all, even in the UK, where regulation makes it easier for patients to choose a clinic and find trustworthy advice. But here too all is not perfect, since the fertility part of healthcare services is to a large extent commercial. This means that many patients must act as consumers, making hard financial choices in an area that is physically and emotionally draining. Questions around how we respond to future scientific advances have not yet been settled and some of the UK’s fertility laws already need updating.
The book has a particularly strong chapter on the pros and cons of preimplantation genetic diagnosis (PGD). The procedure is strictly licensed in the UK to help couples with serious genetic diseases who do not want to pass these on to their children, but there remain grey areas when it comes to deciding just how serious a condition must be to qualify. In the USA, this same procedure is used by some for non-medical sex selection, where embryos are removed and replaced with those of the chosen sex. In Britain, non-medical sex selection is banned by law. In the USA it’s permitted, though not all clinicians are prepared to offer it. Some told Klitzman that they do it if the patient wants it, whatever the circumstances. Others said they would only do it to help a family with several children of the same sex wanting a mix, while others still refuse to offer it at all. The debate, he suggests, may already have moved on, with the question now resting not on whether the process should be allowed, but on when and how.
Klitzman allows those who have undergone fertility treatment to talk through their experiences and articulate their personal views at length. These are worth reading, as they outline the range of scenarios encountered in the USA. In the final chapter, Klitzman offers a forceful and eloquent case for better regulation. He argues that the guidelines that exist in the USA are contradictory, confusing and inadequately enforced, and thus create a gap between formal codes and practice. He calls for better public education so patients can understand the limitations and risks of fertility treatment and he wants better training for providers, including the creation of specialist clinics for specific practices, such as PGD. He argues for certification or licensing of egg agencies, suggesting that they should be run not by business people but by clinicians, and should be mandated to be transparent about the risks of donating and buying gametes. He’s worried about the lack of egg tracking, which, he rightly points out, creates a danger of donor siblings inadvertently marrying.
Some US doctors fear that wider debate about government regulation of IVF may allow the anti-abortion lobby to stymie parts of the industry that do help millions of people to have children. But there is no clear way forward in a world where the components for creating an embryo may be traded on the internet and where the rules on fertility treatments vary from country to country. This book offers a reminder of the potential of new technologies to help millions more still unable to create their own biological children, while pointing out the complexities and risks these developing technologies will bring.