Is There a Case in Favour of Predictive Genetic Testing in Young Children?

Genetic testing technology has brought the ability to predict the onset of diseases many years before symptoms appear and the use of such predictive testing is now widespread. The medical fraternity has met the application of this practice to children with caution. The justification for their predominantly prohibitive stance has revolved around the lack of a readily identifiable medical benefit in the face of potential psychological harms to the child. We argue that predictive testing can have important psychosocial benefits and that the interests of the child have been construed too narrowly. Proponents of a prohibitive stance also argue that testing in childhood breaches the child's future right to make the same decision as an autonomous adult and to maintain this information as confidential. We argue that predictive genetic testing of children is not necessarily a violation of the child's future autonomy. Indeed, in some cases, such testing may facilitate the development of autonomy in the maturing child. We argue that parents are generally best placed to judge what is in their own child's overall interests, and that a parental request for testing after appropriate genetic counselling should be respected unless there is clear evidence that the child will be harmed in an overall sense as a result of testing.     

Welfarism versus 'free enterprise': considerations of power and justice in the Philippine healthcare system

The just distribution of benefits and burdens of healthcare, at least in the contemporary Philippine context, is an issue that gravitates towards two opposing doctrines of welfarism and 'free enterprise.' Supported largely by popular opinion, welfarism maintains that social welfare and healthcare are primarily the responsibility of the government. Free enterprise (FE) doctrine, on the other hand, maintains that social welfare is basically a market function and that healthcare should be a private industry that operates under competitive conditions with minimal government control. I will examine the ethical implications of these two doctrines as they inform healthcare programmes by business and government, namely: (a) the Devolution of Health Services and (b) the Philippine Health Maintenance Organization (HMO). I will argue that these doctrines and the health programmes they inform are deficient in following respects: (1) equitable access to healthcare, (2) individual needs for premium healthcare, (3) optimal utilisation of health resources, and (4) the equitable assignment of burdens that healthcare entails. These respects, as considerations of justice, are consistent with an operational definition of 'power' proposed here as 'access to and control of resources.'     

Informed Consent in Direct‐to‐Consumer Personal Genome Testing: The Outline of A Model between Specific and Generic Consent

Broad genome‐wide testing is increasingly finding its way to the public through the online direct‐to‐consumer marketing of so‐called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision‐making with regard to the testing offer, we argue that current practices of information provision are insufficient and that there is a place – and a need – for informed consent in personal genome testing, also when it is offered commercially. The increasing quantity, complexity and diversity of most testing offers, however, pose challenges for information provision and informed consent. Both specific and generic models for informed consent fail to meet its moral aims when applied to personal genome testing. Consumers should be enabled to know the limitations, risks and implications of personal genome testing and should be given control over the genetic information they do or do not wish to obtain. We present the outline of a new model for informed consent which can meet both the norm of providing sufficient information and the norm of providing understandable information. The model can be used for personal genome testing, but will also be applicable to other, future forms of broad genetic testing or screening in commercial and clinical settings.     

Rethinking counselling in prenatal screening: An ethical analysis of informed consent in the context of non-invasive prenatal testing (NIPT)

Informed consent is a key condition for prenatal screening programmes to reach their aim of promoting reproductive autonomy. Reaching this aim is currently being challenged with the introduction of non-invasive prenatal testing (NIPT) in first-trimester prenatal screening programmes: amongst others its procedural ease—it only requires a blood draw and reaches high levels of reliability—might hinder women’s understanding that they should make a personal, informed decision about screening. We offer arguments for a renewed recognition and use of informed consent compared to informed choice, and for a focus on value-consistent choices and personalized informational preferences. We argue for a three-step counselling model in which three decision moments are distinguished and differently addressed: (1) professionals explore women’s values concerning whether and why they wish to know whether their baby has a genetic disorder; (2) women receive layered medical-technical information and are asked to make a decision about screening; (3) during post-test counselling, women are supported in decision-making about the continuation or termination of their pregnancy. This model might also be applicable in other fields of genetic (pre-test) counselling, where techniques for expanding genome analysis and burdensome test-outcomes challenge counselling of patients.     

The Ethics of Continued Life‐Sustaining Treatment for those Diagnosed as Brain‐dead

Given the long‐standing controversy about whether the brain‐dead should be considered alive in an irreversible coma or dead despite displaying apparent signs of life, the ethical and policy issues posed when family members insist on continued treatment are not as simple as commentators have claimed. In this article, we consider the kind of policy that should be adopted to manage a family's insistence that their brain‐dead loved one continues to receive supportive care. We argue that while it would be ethically inappropriate to continue to devote scarce acute care resources to such patients in a hospital setting, it may not be ethically inappropriate for patients to receive these resources in certain other settings. Thus, if a family insists on continuing to care for their brain‐dead loved at their home, we should not, from a policy perspective, interfere with the family's wishes. We also argue that healthcare professionals should make some effort to facilitate the transfer of brain‐dead patients to these other settings when families insist on continued treatment despite being informed about the lack of any potential for recovery of consciousness. Our arguments are strengthened by the fact that patients in a persistent vegetative state, who, when correctly diagnosed, also have no potential for recovery of consciousness, are routinely transferred from hospitals to nursing homes or long‐term care facilities where they continue to be ventilated, tube fed and to receive other supportive care. We also briefly explore the question of who should be responsible for the costs of such treatment at the long‐term care facility.     

A burden from birth? Non‐invasive prenatal testing and the stigmatization of people with disabilities

The notion of being a burden to others is mostly discussed in the context of care‐intensive diseases or end‐of‐life decisions. But the notion is also crucial in decision‐making at the beginning of life, namely regarding prenatal testing. Ever more sophisticated testing methods, especially non‐invasive prenatal testing (NIPT), allow the detection of genetic traits in the unborn child that may cause disabilities. A positive result often influences the decision of the pregnant women towards a termination of the pregnancy. Thus, critics claim that these testing methods send a negative message to people with disabilities. At the core of this is what we call the burden assumption. This assumption claims that children with disabilities are necessarily a burden to others, especially to their parents and other family members. In this paper, we discuss what being a burden to others means in this context and how such an attitude can be avoided without restraining reproductive autonomy. A closer examination shows that the burden assumption is mostly based on misinformation and a false model of disability. Empirical studies as well as narrative evidence from parents who raise a child with disabilities show that the burden assumption is wrong. Raising a child with disabilities does not necessarily mean a decrease in the quality of life. We show how the burden assumption can be challenged through an advanced genetic counselling that combines empirical evidence with narratives from a first‐person perspective.     

Stocking the Genetic Supermarket: Reproductive Genetic Technologies and Collective Action Problems

Reproductive genetic technologies (RGTs) allow parents to decide whether their future children will have or lack certain genetic predispositions. A popular model that has been proposed for regulating access to RGTs is the ‘genetic supermarket’. In the genetic supermarket, parents are free to make decisions about which genes to select for their children with little state interference. One possible consequence of the genetic supermarket is that collective action problems will arise: if rational individuals use the genetic supermarket in isolation from one another, this may have a negative effect on society as a whole, including future generations. In this article we argue that RGTs targeting height, innate immunity, and certain cognitive traits could lead to collective action problems. We then discuss whether this risk could in principle justify state intervention in the genetic supermarket. We argue that there is a plausible prima facie case for the view that such state intervention would be justified and respond to a number of arguments that might be adduced against that view.     

Parental attitudes toward genetic testing for pediatric deafness

Recent molecular genetic advances have resulted in genetic testing becoming an option for deaf individuals and their families. However, there is little information about the interest in such testing. To investigate this issue, parents with normal hearing who have one or more deaf children were surveyed about their attitudes toward diagnostic, carrier, and prenatal genetic testing for deafness. This population was chosen because it represents the majority of individuals who are encountered in clinical practice, given that 90%-95% of deaf individuals are born to persons with normal hearing. Of 328 surveys distributed, 96 were completed and returned. Of the respondents, 96% recorded a positive attitude toward genetic testing for deafness, including prenatal testing, although none would use this information to terminate an affected pregnancy. All respondents had a poor understanding of genetics, with 98% both incorrectly estimating the recurrence risk of deafness and misunderstanding the concept of inheritance. Notably, these findings were similar in the group who had had genetic testing for their children and in the group who had not, suggesting either that the parents who received genetic testing did not receive genetic counseling or that the counseling was not effective. On the basis of these results, it was concluded that this population is interested in the use of genetic testing and that testing should not be done without first providing formal genetic counseling. Appropriate counseling can help parents to understand the risks, benefits, and limitations of genetic testing.     

《粮食和农业植物遗传资源国际条约》与《名古屋议定书》比较研究

《粮食和农业植物遗传资源国际条约》（简称《条约》）与《生物多样性公约关于遗传资源获取和公平公正地分享由遗传资源利用产生惠益的名古屋议定书》（简称《议定书》）是遗传资源获取和惠益分享领域两个重要的国际法律文书,建立了各自的获取和惠益分享机制。由于担忧两个法律文书之间存在监管重叠,以及对我国遗传资源的保护和利用现状不够了解,我国均未批准加入。本文从目标、范围、获取和惠益分享框架和模式及受益者等4四个方面比较了《条约》和《议定书》的差异,结合我国遗传资源的保护和利用现状,就是否加入《条约》与《议定书》提出了以下建议：（1）两个国际法律文书均应加入;（2）在履行《条约》时,需要加强作物野生近缘种的保护,防止资源流失;（3）在履行《议定书》时,监测和评估我国遗传资源应用能力,并适时提出修订《议定书》条款的要求。     

A global biodiversity fund to implement distributive justice for genetic resources

This article examines the question of who has a right to control and benefit from genetic resources globally. To this end it draws on different accounts in the resource rights literature with a focus on the specific features that distinguish genetic resources from other types of natural resources. It will be argued that due to the intangible and non‐territorial nature of genetic resources, territorial rights over these resources are difficult to maintain. Moreover, the vulnerability of genetic resources implies that much cost and effort is required to protect them. I will argue that not only benefits resulting from the use of genetic resources but also these costs associated with their protection should be an object of distributive justice. To accommodate these two points I will introduce the model of a global biodiversity fund that could replace the bilateral access and benefit sharing negotiations suggested by the Convention on Biological Diversity.     

Ectogenesis,abortion and a right to the death of the fetus

Many people believe that the abortion debate will end when at some point in the future it will be possible for fetuses to develop outside the womb. Ectogenesis, as this technology is called, would make possible to reconcile pro‐life and pro‐choice positions. That is because it is commonly believed that there is no right to the death of the fetus if it can be detached alive and gestated in an artificial womb. Recently Eric Mathison and Jeremy Davis defended this position, by arguing against three common arguments for a right to the death of the fetus. I claim that their arguments are mistaken. I argue that there is a right to the death of the fetus because gestating a fetus in an artificial womb when genetic parents refuse it violates their rights not to become a biological parent, their rights to genetic privacy and their property rights. The right to the death of the fetus, however, is not a woman's right but genetic parents’ collective right which only can be used together.     

Genes, embryos, and future people

Testing embryonic cells for genetic abnormalities gives us the capacity to predict whether and to what extent people will exist with disease and disability. Moreover, the freezing of embryos for long periods of time enables us to alter the length of a normal human lifespan. After highlighting the shortcomings of somatic-cell gene therapy and germ-line genetic alteration, I argue that the testing and selective termination of genetically defective embryos is the only medically and morally defensible way to prevent the existence of people with severe disability, pain and suffering that make their lives not worth living for them on the whole. In addition, I consider the possible harmful effects on children born from frozen embryos after the deaths of their biological parents, or when their parents are at an advanced age. I also explore whether embryos have moral status and whether the prospects for disease-preventing genetic alteration can justify long-term cryopreservation of embryos.     

Human enhancement and sexual dimorphism

I argue that the existence of sexual dimorphism poses a profound challenge to those philosophers who wish to deny the moral significance of the idea of 'normal human capacities' in debates about the ethics of human enhancement. The biological sex of a child will make a much greater difference to their life prospects than many of the genetic variations that the philosophical and bioethical literature has previously been concerned with. It seems, then, that bioethicists should have something to say about the choice between a male and a female embryo. Either, 1) parents have reason to choose boys over girls; (2) parents have reason to choose girls over boys; or, (3) parents have neither reason to choose girls over boys nor reason to choose boys over girls. Embracing either of the first two alternatives has strongly counterintuitive--and arguably morally repugnant--consequences. To motivate the third option we must either make reference to the idea of 'normal human capacities' or argue that parents should consider the interests of society when thinking about what sort of children they should bring into the world - an implication that should be extremely controversial in debates about the 'new eugenics'. I conclude, then, that the idea of 'normal human capacities' is properly crucial to reasoning about the ethics of shaping future persons.     

Opinion: predictive testing for Huntington disease in childhood: challenges and implications.

Predictive testing for HD strongly highlights the need for autonomy and the need for each individual to decide about his or her willingness-or unwillingness-to obtain genetic information predictive of the future outcome. In respect of this principle, testing for minors should not be offered at the request of a third party, and prenatal testing which would result in the birth of a child at increased risk for HD should, where possible, be avoided. If we accede to the wishes of the parents for their children to be tested, we will have broken the primary principles of confidentiality, privacy, and individual justice that are owed to those children. This could be the thin edge of a wedge which could result in adoption agencies, educational institutions, insurance companies, and other third parties demanding genetic testing for another individual. Despite years of careful planning, predictive testing for HD is turning out to be more complex and challenging than ever expected. We need a great deal of care and concern in developing our response to this challenge. Careful long-term assessment and documentation of the impact of such testing is needed, so that the appropriate guidelines can be developed, guidelines which both protect families with HD and at the same time give individuals the opportunity to participate in predictive testing programs.     

GENETIC ENGINEERING TO AVOID GENETIC NEGLECT: FROM CHANCE TO RESPONSIBILITY

Currently our assessment of whether someone is a good parent depends on the environmental inputs (or lack of such inputs) they give their children. But new genetic intervention technologies, to which we may soon have access, mean that how good a parent is will depend also on the genetic inputs they give their children. Each new piece of available technology threatens to open up another way that we can neglect our children. Our obligations to our children and our susceptibilities to corresponding legal and moral sanctions may be about to explosively increase. In this paper I argue that we should treat conventional neglect and ‘genetic neglect’– failing to use genetic intervention technologies to prevent serious diseases and disabilities – morally consistently. I conclude that in a range of cases parents will have a moral obligation to use genetic treatments to prevent serious disabilities in their children. My particular focus is on prenatal interventions and their impact of the bodily integrity of expectant mothers. I conclude that although bodily integrity constrains moral obligations, it is outweighed in a range of cases.     

星座图聚类分析在小麦品种资源分类中的应用

根据星座图聚类分析的原理和方法,对濮阳市农科所从各地引进的20个小麦品种进行分析,分成3类,分析结果与田间表现相吻合。为育种者进行亲本选择和小麦品种资源分类提供了依据。     

Genetic research on the UK population--do new principles need to be developed?

Governments around the world are beginning to generate population databases as resources for genetic research. In the UK, a proposal has been tabled that plans to incorporate National Health Service information--a move that will effectively create a database of around 60 million. However, this new population collection will not conform to standards established by other national genetic databases, and the UK government report has not accounted for key ethical issues.     

Attitude and awareness of public towards genetic testing in Riyadh,Saudi Arabia

The current study was designed to evaluate the attitude of the Saudi general population towards knowledge, perception and awareness about genetic testing. Using a convenience sampling technique, an online survey was used to collect the data. The survey consisted of 16 questions that covered basic demographics and several scenarios that assess subjects’ perceptions regarding genetic testing. Answering all questions was required for completing the survey. Among 333 subjects, 53.5% were male, 18.9% were married, and 99.4% were muslims. Around 75% has/will have a bachelor degree. About 59% were students. About 87% would consider genetic testing before marriage and similar percentage would not consider conceiving a child if the genetic screening indicated that there is 100% chance the child will be born with genetic disorder. Neither marital status (Single = 87.04%, married = 87.30% (P = 0.955)) nor gender (male = 85.96, female = 88.39 (P = 0.509)) affected the aforementioned decision. When subjects were asked if they would choose abortion knowing that the embryo has a severe genetic disorder, 62.7% answered yes. In general, 80.4% were willing to be recruited into a genetics study, married subjects were more reluctant to be recruited compared to singles (30% and 17% (P = 0.018) respectively). There was no difference between males and females in the decision of joining a genetic study. Also 78.4% supported creation of genetic disease database and family maps. 69.7% of the participants supported government enforcement of the genetic testing, 56.2% supported government-run facilities for Saudi citizens to have genetic tests. We conclude that married people were in favor of genetic testing than the single counterparts, secondly, single status people supported the idea of having genetic tests before their marriage they were supportive of the idea of the government taking a leading role in enforcing the genetic testing and creation of the genetic banks.     

Surrogate Motherhood and Abortion for Fetal Abnormality

A diagnosis of fetal abnormality presents parents with a difficult – even tragic – moral dilemma. Where this diagnosis is made in the context of surrogate motherhood there is an added difficulty, namely that it is not obvious who should be involved in making decisions about abortion, for the person who would normally have the right to decide – the pregnant woman – does not intend to raise the child. This raises the question: To what extent, if at all, should the intended parents be involved in decision‐making? In commercial surrogacy it is thought that as part of the contractual agreement the intended parents acquire the right to make this decision. By contrast, in altruistic surrogacy the pregnant woman retains the right to make these decisions, but the intended parents are free to decide not to adopt the child. We argue that both these strategies are morally unsound, and that the problems encountered serve to highlight more fundamental defects within the commercial and altruistic models, as well as in the legal and institutional frameworks that support them. We argue in favour of the professional model, which acknowledges the rights and responsibilities of both parties and provides a legal and institutional framework that supports good decision‐making. In particular, the professional model acknowledges the surrogate's right to decide whether to undergo an abortion, and the intended parents' obligation to accept legal custody of the child. While not solving all the problems that arise in surrogacy, the model provides a framework that supports good decision‐making.     

主要发达国家生物技术关键领域SCI计量对比研究

生物技术是我国战略性高新技术发展领域,也是全球各国在生物经济时代能否获胜的关键技术。本文通过科学引文索引数据库（SCI）中论文收录文献的文献计量学研究,对单克隆抗体、疫苗、重组蛋白、基因治疗、干细胞研究、组织工程、基因组学、蛋白质组学、芯片技术九类关键技术领域的全球研究分布格局进行了探讨,并结合生物医药产业链进行定标比超研究,以期发现我国在全球生物技术领域所处的位置和产业差距。研究发现美国在以上关键技术领域均处于全球绝对领先地位,而我国在某些技术领域如芯片、组织工程、组学等领域已具有一定比较优势和国际竞争能力,但在较长时期内研发和产品仍将处于跟随地位。