We have a reason to use information which is available about such genes in our reproductive decision-making; (3) couples should selec.

Investigators and institutional review boards should integrate plans about the appropriate disclosure of individual genetic results when designing research studies. The ethical principles of beneficence, respect, reciprocity, and justice provide justification for routinely offering certain results to research participants. We propose a result-evaluation approach that assesses the expected information and the context of the study in order to decide whether results should be offered. According to this approach, the analytic validity and the clinical utility of a specific result determine whether (...) it should be offered routinely. Different results may therefore require different decisions even within the same study. We argue that the threshold of clinical utility for disclosing a result in a research study should be lower than the threshold used for clinical use of the same result. The personal meaning of a result provides additional criteria for evaluation. Finally, the context of the study allows for a more nuanced analysis by addressing the investigators' capabilities for appropriate disclosure, participants' alternative access to the result, and their relationship with the investigators. This analysis shows that the same result may require different decisions in different contexts. (shrink)

A new landscape of prenatal testing is presently developing, including new techniques for risk-reducing, non-invasive sampling of foetal DNA and drastically enhanced possibilities of what may be rapidly and precisely analysed, surrounded by a growing commercial genetic testing industry and a general trend of individualization in healthcare policies. This article applies a set of established ethical notions from past debates on PNT for analysing PNT screening-programmes in this new situation. While some basic challenges of PNT stay untouched, the new development (...) supports a radical individualization of how PNT screening is organized. This reformation is, at the same time, difficult to reconcile with responsible spending of resources in a publicly funded healthcare context. Thus, while the ethical imperative of individualization holds and applies to PNT, the new landscape of PNT provides reasons to start rolling back the type of mass-screening programmes currently established in many countries. Instead, more limited offers are suggested, based on considerations of severity of conditions and optimized to simultaneously serve reproductive autonomy and public health within an acceptable frame of priorities. The new landscape of PNT furthermore underscores the ethical importance of supporting and including people with disabilities. For the very same reason, no ban on what may be analysed using PNT in the new landscape should be applied, although private offers must, of course, conform to strict requirements of respecting reproductive autonomy and what that means in terms of counselling. (shrink)

Advances in genomics have led to calls for developing population-based preventive genomic sequencing programs with the goal of identifying genetic health risks in adults without known risk factors. One critical issue for minimizing the harms and maximizing the benefits of PGS is determining the kind and degree of control individuals should have over the generation, use, and handling of their genomic information. In this article we examine whether PGS programs should offer individuals the opportunity to selectively opt out of the (...) sequencing or analysis of specific genomic conditions or whether PGS should be implemented using an all-or-nothing panel approach. We conclude that any responsible scale-up of PGS will require a menu approach that may seem impractical to some, but that draws its justification from a rich mix of normative, legal, and practical considerations. (shrink)

Thomas Murray's graceful and humane book illuminates one of the most morally complex areas of everyday life: the relationship between parents and children. What do children mean to their parents, and how far do parental obligations go? What, from the beginning of life to its end, is the worth of a child? Ethicist Murray leaves the rarefied air of abstract moral philosophy in order to reflect on the moral perplexities of ordinary life and ordinary people. Observing that abstract moral terms (...) such as altruism and selfishness can be buried in the everyday doings of families, he maintains that ethical theory needs a richer description than it now has of the moral life of parents and children. How far should adults go in their quest for children? What options are available to women who do not want to bear a child now? Should couples be allowed to reject a child because of genetic disability or "wrong" gender? How can we weigh the competing claims of the genetic and the rearing parents to a particular child? _The Worth of a Child_ couples impressive learning with a conversational style. Only by getting down to cases, Murray insists, can we reach moral conclusions that are unsentimental, farsighted, and just. In an era of intense public and private acrimony about the place and meaning of "family values," his practical wisdom about extraordinary difficult moral issues offers compelling reading for both experienced and prospective parents, as well as for ethicists, social and behavioral scientists, and legal theorists. (shrink)

Whole genome sequencing is quickly becoming more affordable and accessible, with the prospect of personal genome sequencing for under $1,000 now widely said to be in sight. The ethical issues raised by the use of this technology in the research context have received some significant attention, but little has been written on its use in the clinical context, and most of this analysis has been futuristic forecasting. This is problematic, given the speed with which whole genome sequencing technology is likely (...) to be incorporated into clinical care. This paper explores one particular subset of these issues: the implications of adopting this technology in the prenatal context without a good understanding of when and how it is useful. Prenatal whole genome sequencing differs from current prenatal genetic testing practice in a number of ethically relevant ways. Most notably, whole genome sequencing would radically increase the volume and scope of available prenatal genetic data. The wealth of new data could enhance reproductive decision‐making, promoting parents' freedom to make well‐informed reproductive decisions. We argue, however, that there is potential for prenatal whole genome sequencing to alter clinical practice in undesirable ways, especially in the short term. We are concerned that the technology could (1) change the norms and expectations of pregnancy in ways that complicate parental autonomy and informed decision‐making, (2) exacerbate the deleterious role that genetic determinism plays in child rearing, and (3) undermine children's future autonomy by removing the option of not knowing their genetic information without appropriate justification. (shrink)

I argue that pregnant women have a duty to refrain from behaviours or to allow certain acts to be done to them for the sake of their foetus if the foetus has a reasonable chance of living and being in a harmed state if the woman does not refrain from those behaviours or allow those things to be done to her. There is a proviso: that her refraining from acting or allowing acts to be performed upon her does not significantly (...) harm her. This duty does not presuppose that the foetus is a person. It is grounded on principles of respect for the interests of sentient beings and prevention of harm to future individuals. I give an argument for a general duty of easy rescue. (shrink)

Non-invasive prenatal testing is an emerging form of prenatal genetic testing that provides information about the genetic constitution of a foetus without the risk of pregnancy loss as a direct result of the test procedure. As with other prenatal tests, information from NIPT can help to make a decision about termination of pregnancy, plan contingencies for birth or prepare parents to raise a child with a genetic condition. NIPT can also be used by women and couples to test purely ‘for (...) information’. Here, no particular action is envisaged following the test; it is motivated entirely by an interest in the result. The fact that NIPT can be performed without posing a risk to the pregnancy could give rise to an increase in such requests. In this paper, we examine the ethical aspects of using NIPT ‘purely for information’, including the competing interests of the prospective parents and the future child, and the acceptability of testing for ‘frivolous’ reasons. Drawing on several clinical scenarios, we claim that arguments about testing children for genetic conditions are relevant to this debate. In addition, we raise ethical concerns over the potential for objectification of the child. We conclude that, in most cases, using NIPT to test for adult-onset conditions, carrier status or non-serious traits presenting in childhood would be unacceptable. (shrink)

In the newly emerging debates about genetics and justice three distinct principles have begun to emerge concerning what the distributive aim of genetic interventions should be. These principles are: genetic equality, a genetic decent minimum, and the genetic difference principle. In this paper, I examine the rationale of each of these principles and argue that genetic equality and a genetic decent minimum are ill-equipped to tackle what I call the currency problem and the problem of weight. The genetic difference principle (...) is the most promising of the three principles and I develop this principle so that it takes seriously the concerns of just health care and distributive justice in general. Given the strains on public funds for other important social programmes, the costs of pursuing genetic interventions and the nature of genetic interventions, I conclude that a more lax interpretation of the genetic difference principle is appropriate. This interpretation stipulates that genetic inequalities should be arranged so that they are to the greatest reasonable benefit of the least advantaged. Such a proposal is consistent with prioritarianism and provides some practical guidance for non-ideal societies–that is, societies that do not have the endless amount of resources needed to satisfy every requirement of justice. (shrink)

As the range of conditions for which we can test prenatally expands, society and the medical profession need to develop guidelines about which tests ought to be offered and which ought not to be. Notions of fetal privacy and confidentiality can help to define limits to what parents may reasonably learn about their future child.

Innovations in science and technology are often the source of public concern, but few have generated debates as intense and at the same time with such a popular fascination as those surrounding genetic technologies. Unequal access to preimplantation diagnosis could give some individuals the opportunity to select children with more advantageous predispositions.

Direct to consumer genetic testing offered via the Internet has been available for over a decade. Initially most tests of this type were offered without the input of the consumer’s own health professional. Ethical and practical concerns have been a raised over the use of such tests: these include fulfilling the requirement for informed consent, utility of results for health care management and the potential burden placed upon health services by people who have taken tests.

Thomas Murray's graceful and humane book illuminates one of the most morally complex areas of everyday life: the relationship between parents and children. What do children mean to their parents, and how far do parental obligations go? What, from the beginning of life to its end, is the worth of a child? Ethicist Murray leaves the rarefied air of abstract moral philosophy in order to reflect on the moral perplexities of ordinary life and ordinary people. Observing that abstract moral terms (...) such as altruism and selfishness can be buried in the everyday doings of families, he maintains that ethical theory needs a richer description than it now has of the moral life of parents and children. How far should adults go in their quest for children? What options are available to women who do not want to bear a child now? Should couples be allowed to reject a child because of genetic disability or "wrong" gender? How can we weigh the competing claims of the genetic and the rearing parents to a particular child? _The Worth of a Child_ couples impressive learning with a conversational style. Only by getting down to cases, Murray insists, can we reach moral conclusions that are unsentimental, farsighted, and just. In an era of intense public and private acrimony about the place and meaning of "family values," his practical wisdom about extraordinary difficult moral issues offers compelling reading for both experienced and prospective parents, as well as for ethicists, social and behavioral scientists, and legal theorists. (shrink)

In August 2005, the United Kingdom's Human Fertilisation & Embryology Authority launched a public consultation, seeking views on the use of preimplantation genetic diagnosis for the detection of cancer genes. The issue was considered by the Authority to be a possible source of particular controversy because it involved extending the range of conditions for which PGD can be licensed in a potentially important way: As well as testing for genes that would definitely cause disease traits, such as cystic fibrosis and (...) muscular dystrophy, this would involve genes that would only possibly manifest themselves phenotypically. In other words, there is a very real chance that such an application of PGD would result in the destruction of perfectly healthy embryos. (shrink)