Exploring the concept of genetic discrimination

The issue of genetic discrimination has attracted growing attention and has been the focus of a recent major Australian inquiry. It is, however, a complex and loaded notion, open to interpretation. This paper explores the concept of genetic discrimination in both its theoretical and practical dimensions. It examines its conceptual underpinnings, how it is understood, and how this understanding fits within the legal framework of disability discrimination. The paper also examines the phenomenon in practice, including the 'fear factor' and the resulting implications for the development of regulatory policy. The paper argues that we need to be discerning in our interpretation of this term, and differentiate between discriminatory conduct which is legal and illegal. Further, it is argued that a concerted societal response to the 'problem' of genetic discrimination is needed involving targeted legal reforms as well as broader non-legal strategies.     

Threshold considerations in fair allocation of health resources: justice beyond scarcity

Application of egalitarian and prioritarian accounts of health resource allocation in low-income countries have both been criticized for implying distribution outcomes that allow decreasing/undermining health gains and for tolerating unacceptable standards of health care and health status that result from such allocation schemes. Insufficient health care and severe deprivation of health resources are difficult to accept even when justified by aggregative efficiency or legitimized by fair deliberative process in pursuing equality and priority oriented outcomes. I affirm the sufficientarian argument that, given extreme scarcity of public health resources in low-income countries, neither health status equality between populations nor priority for the worse off is normatively adequate. Nevertheless, the threshold norm alone need not be the sole consideration when a country's total health budget is extremely scarce. Threshold considerations are necessary in developing a theory of fair distribution of health resources that is sensitive to the lexically prior norm of sufficiency. Based on the intuition that shares must not be taken away from those who barely achieve a minimal level of health, I argue that assessments based on standards of minimal physical/mental health must be developed to evaluate the sufficiency of the total resources of health systems in low-income countries prior to pursuing equality, priority, and efficiency based resource allocation. I also begin to examine how threshold sensitive health resource assessment could be used in the Philippines.     

框架描述对医疗资源分配公平感的影响

目的:初步探讨医疗资源分配方案设置及框架描述对人们感知公平的影响。方法:以120名大学生为研究对象,自编情境问题,分别依据Miller定义的平等、需求、责任及付出原则制定医疗资源分配分配方案,采用正、负及平衡框架进行描述。被试被随机分为三组,每组被试需要评估同一框架下,四种分配方案的公平性。结果:结果显示,分配方案主效应显著(F=7.27,P0.01),按照需求原则分配医疗资源,被试感到不公平(t=-2.04,P0.01),而以付出原则分配,被试感到公平(t=2.87,P0.01),以按责与平等原则分配,被试没有显著的公平或不公平感(P.05)。框架描述主效应显著(F=6.08,P.05),以正框架描述,公平感评估显著高于平衡框架与负框架。框架描述与分配原则交互作用显著(F=3.93,P0.01),在正框架下,分配方案效应不显著(F=1.29,P0.05),在负框架与平衡框架下,分配方案效应显著(F平衡=9.23,P0.01;F负=4.69,P0.01)。依据按需与按责原则制定的分配方案受到框架描述影响(F按需=12.88,P0.01;F按责=4.12,P0.05),而依据平等原则、付出原则制定的分配方案不会受到框架描述的影响。结论:分配原则及框架描述均能显著影响人们对医疗资源分配的公平感知。     

FAIRNESS AND EQUITY IN THE PROVISION OF ANTI‐RETROVIRAL THERAPY: SOME REFLECTIONS FROM LESOTHO

The number of people in immediate need of anti‐retroviral treatment (ART) in the southern African region continues to significantly exceed the capacity of health systems there to provide it. Approaches to this complex rationing dilemma have evolved in different directions. The ethical concepts of fairness and equity have been suggested as a basis to guide the development of approaches to select patients for ART. This article reports the results of a case study on patient selection at a rural ART clinic in Lesotho. The purpose of the study was to examine whether or not such concepts had relevance or operative value for a treatment team providing ART in rural Lesotho. The study found that while concepts of fairness and equity were relevant to the work of the treatment team, patient selection practices did not necessarily reflect what these concepts entail. The idea of fairness as a structured, formalized selection process did not figure in the approach to ART provision at the site. A less formal, ‘first‐come‐first‐served’ approach was adopted. While there was knowledge among some team members that social, economic or geographic conditions inhibit individuals and groups from gaining access to ART and that this was inequitable, it was felt that there was little they could do to try to mediate the impact of these conditions. The study's findings pose importance questions about the approach to ART programming in resource constrained settings. The findings also question the relevance of trying to achieve fairness and equity when the gap between need for care and capacity to provide it remains so large.     

ALTERNATIVES TO NATIONAL AVERAGE INCOME DATA AS ELIGIBILITY CRITERIA FOR INTERNATIONAL SUBSIDIES: A SOCIAL JUSTICE PERSPECTIVE

Current strategies to address global inequities in access to life‐saving vaccines use averaged national income data to determine eligibility. While largely successful in the lowest income countries, we argue that this approach could lead to significant inefficiencies from the standpoint of justice if applied to middle‐income countries, where income inequalities are large and lead to national averages that obscure truly needy populations. Instead, we suggest alternative indicators more sensitive to social justice concerns that merit consideration by policy‐makers developing new initiatives to redress health inequities in middle‐income countries.     

JUSTIFIED COMMITMENTS? CONSIDERING RESOURCE ALLOCATION AND FAIRNESS IN MÉDECINS SANS FRONTIÈRES‐HOLLAND

Non-governmental aid programs are an important source of health care for many people in the developing world. Despite the central role non-governmental organizations (NGOs) play in the delivery of these vital services, for the most part they either lack formal systems of accountability to their recipients altogether, or have only very weak requirements in this regard. This is because most NGOs are both self-mandating and self-regulating. What is needed in terms of accountability is some means by which all the relevant stakeholders can have their interests represented and considered. An ideally accountable decision-making process for NGOs should identify acceptable justifications and rule out unacceptable ones. Thus, the point of this paper is to evaluate three prominent types of justification given for decisions taken at the Dutch headquarters of Médecins sans Frontières. They are: population health justifications, mandate-based justifications and advocacy-based justifications. The central question at issue is whether these justifications are sufficiently robust to answer the concerns and objections that various stakeholders may have. I am particularly concerned with the legitimacy these justifications have in the eyes of project beneficiaries. I argue that special responsibilities to certain communities can arise out of long-term engagement with them, but that this type of priority needs to be constrained such that it does not exclude other potential beneficiaries to an undesirable extent. Finally, I suggest several new institutional mechanisms that would enhance the overall equity of decisions and so would ultimately contribute to the legitimacy of the organization as a whole.     

The legitimacy of elite gatekeeping

Natasha Warikoo’s study of how students at Harvard, Brown, and Oxford Universities view race and fairness highlights the vast differences between the U.S. and Britain with respect to perceptions of meritocracy by these winners in the competition for places in elite institutions. The strict enforcement of uniform standards for admission is seen as critical and legitimate at Oxford, whereas a more holistic approach in the U.S. – one that sees racial diversity as an important and desirable part of the institution’s culture and identity – is seen as critical to a “diversity bargain”. I question the sources of students’ ideas about race and the diversity bargain, suggesting that they may be rooted more in their pre-college experiences than in their life at university. I also raise questions about whether and how an admissions lottery would work to address some of Warikoo’s concerns.     

四川短尾鼩（Anourosorex squamipes)种群动态研究

四川短尾鼩(Anourosorex squmipes)的怀孕期在每年的4、7 、9月,种群数量高峰为6月和10～11月。其种群数量的消长可分为种群潜伏期(3-4月)、盛发期(6、8、9月)、始衰期(10-11月)、凋落期(12、1、2月)以及数量间歇期(7月)和繁殖间歇期(5月)。该兽在田间是以个体群为基础的聚集型分布格局,并有高密度时低聚集和低密度时高聚集的分布特征。     

Ethics and drug resistance

This paper reviews the dynamics behind, and ethical issues associated with, the phenomenon of drug resistance. Drug resistance is an important ethical issue partly because of the severe consequences likely to result from the increase in drug resistant pathogens if more is not done to control them. Drug resistance is also an ethical issue because, rather than being a mere quirk of nature, the problem is largely a product of drug distribution. Drug resistance results from the over-consumption of antibiotics by the wealthy; and it, ironically, results from the under-consumption of antibiotics, usually by the poor or otherwise marginalized. In both kinds of cases the phenomenon of drug resistance illustrates why health (care)--at least in the context of infectious disease--should be treated as a (global) public good. The point is that drug resistance involves 'externalities' affecting third parties. When one patient develops a resistant strain of disease because of her over- or under-consumption of medication, this more dangerous malady poses increased risk to others. The propriety of free-market distribution of goods subject to externalities is famously dubious--given that the 'efficiency' rationale behind markets assumes an absence of externalities. Market failure in the context of drug resistance is partly revealed by the fact that no new classes of antibiotics have been developed since 1970. I conclude by arguing that the case of drug resistance reveals additional reasons--to those traditionally appealed to by bioethicists--for treating health care as something special when making policy decisions about its distribution.     

AN INQUIRY INTO THE PRINCIPLES OF NEEDS‐BASED ALLOCATION OF HEALTH CARE

The concept of need is often proposed as providing an additional or alternative criterion to cost‐effectiveness in making allocation decisions in health care. If it is to be of practical value it must be sufficiently precisely characterized to be useful to decision makers. This will require both an account of how degree of need for an intervention is to be determined and a prioritization rule that clarifies how degree of need and the cost of the intervention interact in determining the relative priority of the intervention. Three common features of health care interventions must be accommodated in a comprehensive theory of need: the probabilistic nature of prognosis (with and without the intervention); the time course of effects; and the fact that the most effective treatments often combine more than one intervention. These common features are problematic for the concept of need. We outline various approaches to prioritization on the basis of need and argue that some approaches are more promising than others.