A commentary on “Why We Should All Pay for Fertility Treatment: An Argument from Ethics and Policy,” from the March‐April 2013 issue.

The identification and avoidance of disease susceptibility in embryos is the most common goal of preimplantation genetic diagnosis (PGD). Most jurisdictions that accept but regulate the availability of PGD restrict it to what are characterized as ‘serious’ conditions. Line-drawing around seriousness is not determined solely by the identification of a genetic mutation. Other factors seen to be relevant include: impact on health or severity of symptoms; degree of penetrance (probability of genotype being expressed as a genetic disorder); potential for therapy; (...) rate of progression; heritability; and age of onset. In the original applications of PGD, most, if not all of these factors were seen as necessary but none was seen as sufficient for determining whether a genetic condition was labelled ‘serious’. This, however, is changing as impact on health or severity of symptoms is coming to eclipse the other considerations. This paper investigates how age of onset (primarily in the context of the United Kingdom (UK)) has become considerably less significant as a criterion for determining ethically acceptable applications of PGD. Having moved off the threshold of permitting PGD testing for only fatal (or seriously debilitating), early-onset diseases, I will investigate reasons for why age of onset will not do any work to discriminate between which adult-onset diseases should be considered serious or not. First I will explain the rationale underpinning age of onset as a factor to be weighed in making determinations of seriousness. Next I will challenge the view that later-onset conditions are less serious for being later than earlier-onset conditions. The final section of the paper will discuss some of the broader disability concerns at stake in limiting access to PGD based upon determinations of the ‘seriousness’ of genetic conditions. Instead of advocating a return to limiting PGD to only early-onset conditions, I conclude that the whole enterprise of trying to draw lines of what is to count as a ‘serious’ condition is itself problematic and in certain ways morally misleading. (shrink)

Since 1980, the number of twin births in the United States has increased 76 percent, and the number of triplets or higher-order multiples has increased over 400 percent. These increases are due in part to increased maternal age, which is associated with spontaneous twinning. But the primary reason for these increases is that more and more people are undergoing fertility treatment. Despite an emerging (but not absolute) consensus in the medical literature that multiples, including twins, should be a far less (...) frequent outcome of fertility treatment, American clinicians currently practice fertility medicine in ways likely to result in twins and, occasionally, triplets-often, they tell us, at the request of their patients. At first blush, one might conclude that these practice patterns show that patients and their doctors have weighed the risks associated with twins against the benefits of swiftly completing their families and decided that the risks are worth taking. That is, their requests for twins must represent their free and informed choices. But there are reasons to be skeptical of this interpretation, including that the preferences of many patients seem to be very strongly shaped, if not sometimes completely constrained, by concerns about costs-costs that mainly result from the routine exclusion of in vitro fertilization from health insurance coverage. It is quite possible, we believe, that these cost concerns actually undermine the autonomy of fertility patients, pushing many of them to take risks with their health and the health of their hoped-for future children. [ABSTRACT FROM AUTHOR]. (shrink)

Since 1980, the number of twin births in the United States has increased 76 percent, and the number of triplets or higher‐order multiples has increased over 400 percent. These increases are due in part to increased maternal age, which is associated with spontaneous twinning. But the primary reason for these increases is that more and more people are undergoing fertility treatment. Despite an emerging (but not absolute) consensus in the medical literature that multiples, including twins, should be a far less (...) frequent outcome of fertility treatment, American clinicians currently practice fertility medicine in ways likely to result in twins and, occasionally, triplets—often, they tell us, at the request of their patients. At first blush, one might conclude that these practice patterns show that patients and their doctors have weighed the risks associated with twins against the benefits of swiftly completing their families and decided that the risks are worth taking. That is, their requests for twins must represent their free and informed choices. But there are reasons to be skeptical of this interpretation, including that the preferences of many patients seem to be very strongly shaped, if not sometimes completely constrained, by concerns about costs—costs that mainly result from the routine exclusion of in vitro fertilization from health insurance coverage. It is quite possible, we believe, that these cost concerns actually undermine the autonomy of fertility patients, pushing many of them to take risks with their health and the health of their hoped‐for future children. (shrink)

In this article, I argue that there is no compelling therapeutic ‘need’ for human nuclear genome transfer to prevent mitochondrial diseases caused by mtDNA mutations. At most there is a strong interest in this technology on the part of some women and couples at risk of having children with mitochondrial disease, and perhaps also a ‘want’ on the part of some researchers who see the technology as a useful precedent – one that provides them with ‘a quiet way station’ in (...) which to refine the micromanipulations techniques essential for other human germline interventions and human cloning. In advance of this argument, I review basic information about mitochondrial disease and novel genetic strategies to prevent the transmission of mutated mitochondria. Next, I address common features of contemporary debates and discussions about so-called mitochondrial replacement. First, I contest the cliché that science-and-technology is fast outpacing ethics. Second, I dispute the accuracy of the term ‘mitochondrial replacement’. Third, I provide a sustained critique of the purported ‘need’ for genetically-related children. In closing, I call into question the mainly liberal defense of human nuclear genome transfer. I suggest an alternative frame of reference that pays particular attention to issues of social justice. I conclude that our limited resources should be carefully expended in pursuit of the common good, which does not include pandering to acquired desires. (shrink)