Reassessing insurers' access to genetic information: genetic privacy, ignorance, and injustice

Many countries have imposed strict regulations on the genetic information to which insurers have access. Commentators have warned against the emerging body of legislation for different reasons. This paper demonstrates that, when confronted with the argument that genetic information should be available to insurers for health insurance underwriting purposes, one should avoid appeals to rights of genetic privacy and genetic ignorance. The principle of equality of opportunity may nevertheless warrant restrictions. A choice-based account of this principle implies that it is unfair to hold people responsible for the consequences of the genetic lottery, since we have no choice in selecting our genotype or the expression of it. However appealing, this view does not take us all the way to an adequate justification of inaccessibility of genetic information. A contractarian account, suggesting that health is a condition of opportunity and that healthcare is an essential good, seems more promising. I conclude that if or when predictive medical tests (such as genetic tests) are developed with significant actuarial value, individuals have less reason to accept as fair institutions that limit access to healthcare on the grounds of risk status. Given the assumption that a division of risk pools in accordance with a rough estimate of people's level of (genetic) risk will occur, fairness and justice favour universal health insurance based on solidarity.     

Genetic enhancement--a threat to human rights?

Genetic enhancement is the modification of the human genome for the purpose of improving capacities or 'adding in' desired characteristics. Although this technology is still largely futuristic, debate over the moral issues it raises has been significant. George Annas has recently leveled a new attack against genetic enhancement, drawing on human rights as his primary weapon. I argue that Annas' appeal to human rights ultimately falls flat, and so provides no good reason to object to genetic technology. Moreover, this argument is an example of the broader problem of appealing to human rights as a panacea for ethical problems. Human rights, it is often claimed, are 'trumps': if it can be shown that a proposed technology violates human rights, then it must be cast aside. But human rights are neither a panacea for ethical problems nor a trump card. If they are drafted into the service of an argument, it must be shown that an actual human rights violation will occur. Annas' argument against genetic technology fails to do just this. I shall conclude that his appeal to human rights adds little to the debate over the ethical questions raised by genetic technology.     

Compulsory sterilisation in Sweden

In the Fall of 1997 the leading Swedish newspaper, Dagens Nyheter , created a media hype over the Swedish policy of compulsory sterilisation that had been in operation between 1935 and 1975. In the discussion that followed the moral condemnation of our medical past was unanimous. However, the reasons for rejecting what had gone on were varied and mutually inconsistent. Three strands of criticism were common: the argument from autonomy, the argument from caution, and the argument from biological scepticism. In the paper it is argued that what point of departure you choose in your criticism of the past should be of consequence also for your ideas about present and future medical practice. In particular, if you rely on the argument from autonomy, you should be prepared to accept a liberal (present and future) use of reproductive techniques.     

Equitable access to ectogenesis for sexual and gender minorities

As the technology for ectogenesis continues to advance, the ethical implications of such developments should be thoroughly and proactively explored. The possibility of full ectogenesis remains hypothetical at present, and myriad concerns regarding the safety and efficacy of the technology must be evaluated and addressed, while pressing moral considerations should be fully deliberated. However, it is conceivable that the technology may become sufficiently well established in the future and that eventually full ectogenesis might be deemed ethically acceptable as a reproductive alternative to gestation within a human womb under certain circumstances. If the safety and efficacy of full ectogenesis are established, if ethical dilemmas are sufficiently well addressed, and if the technology is offered as a reproductive option to cisgender heterosexual individuals or couples desiring to become parents, there is a moral obligation grounded in social justice to ensure that full ectogenesis be made available to individuals or couples identifying as members of sexual- or gender-minority groups who likewise seek to pursue parenthood. We examine the history of access to current family-building options, including assisted reproductive technology, surrogacy and adoption, for these populations and conclude that in the absence of robust empirical evidence suggesting an increased risk of harm to children of individuals and couples who identify as members of sexual- or gender-minority groups, equitable access to ectogenesis as a pathway to parenthood for sexual and gender minorities must be assured as a matter of reproductive justice.     

GETTING MORAL ENHANCEMENT RIGHT: THE DESIRABILITY OF MORAL BIOENHANCEMENT

We respond to a number of objections raised by John Harris in this journal to our argument that we should pursue genetic and other biological means of morally enhancing human beings (moral bioenhancement). We claim that human beings now have at their disposal means of wiping out life on Earth and that traditional methods of moral education are probably insufficient to achieve the moral enhancement required to ensure that this will not happen. Hence, we argue, moral bioenhancement should be sought and applied. We argue that cognitive enhancement and technological progress raise acute problems because it is easier to harm than to benefit. We address objections to this argument. We also respond to objections that moral bioenhancement: (1) interferes with freedom; (2) cannot be made to target immoral dispositions precisely; (3) is redundant, since cognitive enhancement by itself suffices.     

IN FAVOUR OF FREEZING EGGS FOR NON-MEDICAL REASONS

This article explores the social benefits and moral arguments in favour of women and couples freezing eggs and embryos for social reasons. Social IVF promotes equal participation by women in employment; it offers women more time to choose a partner; it provides better opportunities for the child as it allows couples more time to become financially stable; it may reduce the risk of genetic and chromosomal abnormality; it allows women and couples to have another child if circumstances change; it offers an option to women and children at risk of ovarian failure; it may increase the egg and embryo pool. There are strong arguments based on equal concern and respect for women which require that women have access to this new technology. Freezing eggs also avoids some of the moral objections associated with freezing embryos.     

HEART DISEASE AND SOCIAL INEQUALITY: ETHICAL ISSUES IN THE AETIOLOGY, PREVENTION AND TREATMENT OF HEART DISEASE

Heart disease is a complex condition that is a leading cause of death worldwide. It is often seen as a disease of affluence, yet is strongly associated with a gradient in socio-economic status. Its highly complex causality means that many different facets of social and economic life are implicated in its aetiology, including factors such as workplace hierarchy and agricultural policy, together with other well-known factors such as what passes for individual 'lifestyle'. The very untangling of causes for heart disease thus inevitably raises social, moral and political issues. These include the proper role of the individual and of larger social forces in its aetiology, prevention and treatment. The construction of risk factors for heart disease likewise is enmeshed with questions of distributive justice in the responsible targeting of those at risk for heart disease, a debate which has received much overt attention in the medical literature, but less attention within the ethical literature. Strategies for addressing a condition of such complex causality can be highly diverse, from pharmaceutical to social interventions, and value issues attach to the choice and presentation of such strategies. For example, prevention strategies may raise complex issues of responsibility and of judgements of what it is to 'live well'. Further ethical debate on this highly political disease would be welcome.     

PALLIATIVE CARE, PUBLIC HEALTH AND JUSTICE: SETTING PRIORITIES IN RESOURCE POOR COUNTRIES

Many countries have not considered palliative care a public health problem. With limited resources, disease-oriented therapies and prevention measures take priority. In this paper, I intend to describe the moral framework for considering palliative care as a public health priority in resource-poor countries. A distributive theory of justice for health care should consider integrative palliative care as morally required as it contributes to improving normal functioning and preserving opportunities for the individual. For patients requiring terminal care , we are guided less by principles of justice and more by the duty to relieve suffering and society's commitment to protecting the professional's obligation to uphold principles of beneficence, compassion and non-abandonment. A fair deliberation process is necessary to allow these strong moral commitments to serve as reasons when setting priorities in resource poor countries.     

Why Procreative Preferences May be Moral – And Why it May not Matter if They Aren't

There has been much argument over whether procreative selection is obligatory or wrong. Rebecca Bennett has recently challenged the assumption that procreative choices are properly moral choices, arguing that these views express mere preferences. This article challenges Bennett's view on two fronts. First, I argue that the Non‐Identity Problem does not show that there cannot be harmless wrongs – though this would require us to abandon the intuitively attractive ‘person‐affecting principle’, that may be a lesser cost than abandoning some more firmly‐held intuition. But, even if we accept Bennett's claim that these choices are not moral, that does not show them to be mere personal preferences. I argue that there is a class of non‐moral ‘categorical preferences’ that have much the same implications as moral preferences. If a moral preference for able‐bodied children is problematic (as Bennett claims), then so is a non‐moral categorical preference. Thus, showing that these preferences are not moral does not show that they are not problematic, since they may still be categorical.     

Electricity and the nervous fluid

Conclusion It may be seen, then, that if one was prepared to accept the existence of insulating sheaths on the nerves, all the arguments raised against the proposed identification of the nervous and electrical fluids, except one, could be answered satisfactorily. The single exception involved the question of how an electrical disturbance in the brain could be confined to a single nerve, and, as was indicated earlier, it was scarcely fair to hold this sort of objection against the electrical theory alone. In that case, there remained no convincing argument to show why one should not accept the identification of the two fluids. On the other hand, of course, it remained an open question as to whether there was any convincing argument to show why one should accept the identification either. Galvani thought that his experiments provided just such an argument.     

Racist organ donors and saving lives

This paper considers what should be done about offers of organs for transplant that come with racist strings attached. Saving lives or improving their quality seem powerful reasons to accept the offer. Fairness, justice, and rejecting racism seem like powerful reasons against. This paper argues that conditional allocation should occur when it would provide access to organs for at least one person without costing others their access to organs. The bulk of the paper concentrates on defending this claim against these objections: (i) that the good that might come about through conditional allocation does so through wrongful complicity in the racist's wrongdoing; (ii) that conditional allocation symbolizes support for racism; and (iii) that conditional allocation is unjust or unfair and is, for that reason, impermissible. The final section, on conditional allocation as a policy, considers the speculative possibility that conditional allocation would reduce access to organs for some, but it argues that, even then, conditional allocation could be justified.     

"The Vulgar Spirit of Blogging": On Language, Culture, and Power in Persian Weblogestan

This article is an ethnographic study of Persian-language weblogs (blogs), focusing on a divisive argument among Iranian bloggers that came to be known as the "vulgarity debate." Sparked by a controversial blogger who ridiculed assertions that Islam was compatible with human rights, the debate revolved around the claim that blogging had a "vulgar spirit" that made it easy for everything from standards of writing to principles of logical reasoning to be undermined. My study focuses primarily on the linguistic side of the controversy: I analyze blogging as an emergent speech genre and identify the structural features and social interactions that make this genre seem "vulgar." I also examine the controversy as a confrontation between bloggers with unequal access to cultural capital and a struggle over "intellectualist" hegemony. In the conclusion, I use the construct of "deep play" to weave together multiple layers of structure, explanation, and meaning in the debate.     

The ethics of ectogenesis-aided foetal treatment

In this paper, we aim to stimulate ethical debate about the morally relevant connection between ectogenesis and the foetus as a potential beneficiary of treatment. Ectogenesis could facilitate foetal interventions by treating the foetus independently of the pregnant woman and provide easier access to the foetus if interventions are required. The moral relevance hereof derives from the observation that, together with other developments in genetic technology and prenatal treatment, this may catalyse the allocation of a patient status to the foetus. The topic of foetal medicine is of growing interest to clinicians, and it also deserves due attention from an ethical perspective. To the extent that these developments contribute to the allocation of a patient status to the foetus (and to its respective interests for medical treatment), normative questions arise about how moral responsibilities towards foetal interests should be balanced against the interests of the pregnant woman. We conclude that, even if ectogenesis could facilitate foetal therapy, it is important to remain sensitive to the fact that it would not circumvent the key ethical concerns that come with in utero foetal treatment and that it may even exacerbate potential conflicts between directive treatment recommendations and the pregnant woman’s autonomous decision to the contrary.     

Simulation study on the efficiencies of MOET nucleus breeding schemes applying marker assisted selection in dairy cattle

Advantages of breeding schemes using genetic marker information and/or multiple ovulation and embryo transfer (MOET) technology over the traditional approach were extensively evaluated through simulation. Milk yield was the trait of interest and QTL was the genetic marker utilized. Eight dairy cattle breeding scenarios were considered, i.e., traditional progeny testing breeding scheme (denoted as STANPT), GASPT scheme including a pre-selection of young bulls entering progeny testing based on their own QTL information, MOETPT scheme using MOET technology to generate young bulls and a selection of young bulls limited within the full-sib family, GAMOPT scheme adopting both QTL pre-selection and MOET technology, COMBPT scheme using a mixed linear model which considered QTL genotype instead of the BLUP model in GAMOPT, and three non-progeny testing schemes, i.e. the MOET, GAMO and COMB schemes, corresponding to MOETPT, GAMOPT and COMBPT with progeny testing being part of the system. Animals were selected based on their breeding value which was estimated under an animal model framework. Sequential selection over 17 years was performed in the simulations and 30 replicates were designed for each scenario. The influences of using QTL information and MOET technology on favorable QTL allele frequency, true breeding values, polygenetic breeding values and the accumulated genetic superiority were extensively evaluated, for five different populations including active sires, lactating cows, bull dams, bull sires, and young bulls. The results showed that the combined schemes significantly outperformed other approaches wherein accumulated true breeding value progressed. The difference between schemes exclusively using QTL information or MOET technology was not significant. The STANPT scheme was the least efficient among the 8 schemes. The schemes using MOET technology had a higher polygenetic response than others in the 17th year. The increases of frequency of the favorable QTL allele varied more greatly across the 3 male groups than in the lactating cows group. The accumulated genetic superiorities of the GASPT scheme, MOETPT scheme, GAMOPT scheme, COMBPT scheme, MOET scheme, GAMO scheme and COMB scheme over the STANPT scheme were 8.42%, 3.59%, 14.58%, 18.54%, 4.12%, 14.12%, 16.50% in active sires and 2.70%, 5.00%, 11.05%, 12.78%, 7.51%, 17.12%, 25.38% in lactating cows. Supported by Key Project for Introducing Advanced International Agriculture Science & Technologies (Grant No. 2006-G48), the National Key Basic Research and Development Program of China (Grant No. 2006CB102107) and National Key Technology Research and Development Program of China (Grant No. 2006BAD04A01).     

Genetic model for longitudinal studies of aging, health, and longevity and its potential application to incomplete data

Many longitudinal studies of aging collect genetic information only for a sub-sample of participants of the study. These data also do not include recent findings, new ideas and methodological concepts developed by distinct groups of researchers. The formal statistical analyses of genetic data ignore this additional information and therefore cannot utilize the entire research potential of the data. In this paper, we present a stochastic model for studying such longitudinal data in joint analyses of genetic and non-genetic sub-samples. The model incorporates several major concepts of aging known to date and usually studied independently. These include age-specific physiological norms, allostasis and allostatic load, stochasticity, and decline in stress resistance and adaptive capacity with age. The approach allows for studying all these concepts in their mutual connection, even if respective mechanisms are not directly measured in data (which is typical for longitudinal data available to date). The model takes into account dependence of longitudinal indices and hazard rates on genetic markers and permits evaluation of all these characteristics for carriers of different alleles (genotypes) to address questions concerning genetic influence on aging-related characteristics. The method is based on extracting genetic information from the entire sample of longitudinal data consisting of genetic and non-genetic sub-samples. Thus it results in a substantial increase in the accuracy of statistical estimates of genetic parameters compared to methods that use only information from a genetic sub-sample. Such an increase is achieved without collecting additional genetic data. Simulation studies illustrate the increase in the accuracy in different scenarios for datasets structurally similar to the Framingham Heart Study. Possible applications of the model and its further generalizations are discussed.     

Covert moral bioenhancement,public health,and autonomy

In a recent article in this journal, Parker Crutchfield argues that if moral bioenhancement ought to be compulsory, as some authors claim, then it ought to be covert, i.e., performed without the knowledge of the population that is being morally enhanced. Crutchfield argues that since the aim of compulsory moral bioenhancement is to prevent ultimate harm to the population, compulsory moral bioenhancement is best categorized as a public health issue, and should therefore be governed by the norms and values that apply in public health settings. In this article, I argue for two related claims. First, I question the extent to which compulsory moral enhancement should be considered a public health issue that ought to be governed by the norms and values that apply in public health settings. Second, I argue that Crutchfield's argument that covert moral bioenhancement would better respect people's autonomy than an overt program overlooks two important autonomy‐based reasons that, in fact, favor an overt moral enhancement program over a covert one.     

Compulsory moral bioenhancement should be covert

Some theorists argue that moral bioenhancement ought to be compulsory. I take this argument one step further, arguing that if moral bioenhancement ought to be compulsory, then its administration ought to be covert rather than overt. This is to say that it is morally preferable for compulsory moral bioenhancement to be administered without the recipients knowing that they are receiving the enhancement. My argument for this is that if moral bioenhancement ought to be compulsory, then its administration is a matter of public health, and for this reason should be governed by public health ethics. I argue that the covert administration of a compulsory moral bioenhancement program better conforms to public health ethics than does an overt compulsory program. In particular, a covert compulsory program promotes values such as liberty, utility, equality, and autonomy better than an overt program does. Thus, a covert compulsory moral bioenhancement program is morally preferable to an overt moral bioenhancement program.     

COMMENTARY ON KHAN'S “GENETIC HARM: BITTEN BY THE BODY THAT KEEPS YOU?”

Several important issues are raised and illuminated in "Genetic Harm"; not least, in its detailed discussion of specific genetic disorders. In particular, it focuses on a type of disorder whose ill effects are not manifested at birth, but only at a later stage in life. The conclusion, with its significant implications for practice, seems quite valid: a moral duty should be recognized to genetically (or otherwise, if feasible) cure an embryo of that which is expected to (later) cause such prospective suffering. Yet the reasons given for that conclusion, as well as much of the argument throughout, concentrate on a debatable notion of "harm". On an alternate account -- drawn in terms of personal identity -- what makes the moral difference in this type of case is rather that the genotype manifests itself, and that a life-history begins, prior to (and thus independently of) any effects of the gene(s) we are called to alter.