Biobanks: Importance,Implications and Opportunities for Genetic Counselors

Biobanks are collections of human biological tissue specimens and related health data. Biobank research hopes to provide novel insights into the genetic component of disease, ultimately leading to a more personalized approach to healthcare. However, biobanks have sparked debate due to the ethical, legal, and social implications surrounding utilization of population samples and data. These controversies include issues of consent, privacy and confidentiality, return of results and data-sharing. This paper provides an overview of the different types and scope of biobanks and an examination of the most pertinent ethical, legal and social considerations surrounding such research, as well as how some of these concerns are being addressed. The paper finishes with a discussion of the relevance of biobanks to the genetic counseling field and concludes that genetic counselors are in a position to make a unique, educated and practical contribution to the ongoing dialogue and direction of biobank research.     

What Lies Beyond Same‐Sex Marriage? Marriage,Reproductive Freedom and Future Persons in Liberal Public Justification

In this article I consider whether the legalization of sex-same marriage implies a right to incestuous marriage. I begin by suggesting that the liberal state get out of the 'marriage' business by leveling down to a universal civil union status. The question is then whether incestuous unions should be both legal and eligible for this status. I argue that the arguments compatible with public reason for prohibiting them outright, or even for excluding them from the permissible types of legally registered partnerships, are quite weak. The objections to allowing such relations are those from (1) child abuse; (2) unfair burdening of society; and (3) the creation of bad lives. I argue that while rape and other forms of child abuse would be no more legal or tolerated than they are now, the concern about any form of weakening a society's legal and political resources to combat such abuses does indeed register on the justificatory scale, but does not prove that such first-degree incestuous sexual relations are inherently bad enough to warrant intervention in their own right. I then argue that the concern about unfairly burdening society with unhealthy persons is not as dangerously totalitarian as we might initially fear, but nor is it strong enough to justify an outright prohibition. Finally, I argue that a concern to dissuade persons from creating certain kinds of lives (children with extreme birth defects) is also not as dangerously totalitarian as we might initially fear, and in fact goes further towards explaining why we might have a legitimate interest in intervening. Nonetheless, I argue that the criminalization of such acts only make sense when they are indicators of other offenses, namely negligence or abuse, and it thus seems that the act of consanguineous reproduction is itself insufficient.     

Dual Citizenship, Double Membership? Membership and Belonging of Immigrants’ Descendants in France and Sweden

Conceptual changes in the classical understanding of citizenship in connection with marked shifts in citizenship regimes have been widely studied in recent decades. Most of this work has been developed to explore legal and institutional aspects, thus giving citizenship a static framework. By turning to individuals?? perceptions, a new picture of citizenship is discovered. The present study pays attention to a group that has not hitherto been central in discussions about citizenship, namely immigrants?? descendants or so-called second-generation immigrants. This group is regarded as being in-between their parents?? native country and the country in which they were themselves born, which could result in an ambiguous membership and potentially divided allegiance, especially for those having dual citizenship. This article introduces the experiences of Turkish descendants in France and Sweden. Qualitative work complemented by survey data shows how dual citizens prioritize one country or both in order to develop new and traditional aspects associated with citizenship. Two dimensions are explored: a civic dimension composed by traditional elements associated with legal status such as rights and duties and a subjective dimension that is defined by the personal elements that link individuals with the country, city, or community to which they belong. Citizenship regimes and paradigms of integration are also problematized in this article in order to capture the context and possible influence over people??s narratives.     

Where should we draw the line between quality of care and other ethical concerns related to medical registries and biobanks?

Together with large biobanks of human samples, medical registries with aggregated data from many clinical centers are vital parts of an infrastructure for maintaining high standards of quality with regard to medical diagnosis and treatment. The rapid development in personalized medicine and pharmaco-genomics only underscores the future need for these infrastructures. However, registries and biobanks have been criticized as constituting great risks to individual privacy. In this article, I suggest that quality with regard to diagnosis and treatment is an inherent, morally normative requirement of health care, and argue that quality concerns in this sense may be balanced with privacy concerns.     

The cultural moral right to a basic minimum of accessible health care

(1) The conception of a cultural moral right is useful in capturing the social-moral realities that underlie debate about universal health care. In asserting such rights, individuals make claims above and beyond their legal rights, but those claims are based on the society's existing commitments and moral culture. In the United States such a right to accessible basic health care is generated by various empirical social facts, primarily the conjunction of the legal requirement of access to emergency care with widely held principles about unfair free riding and just sharing of costs between well and ill. The right can get expressed in social policy through either single-payer or mandated insurance. (2) The same elements that generate this right provide modest assistance in determining its content, the structure and scope of a basic minimum of care. They justify limits on patient cost sharing, require comparative effectiveness, and make cost considerations relevant. They shed light on the status of expensive, marginally life extending, last-chance therapies, as well as life support for PVS patients. They are of less assistance in settling contentious debates about screening for breast and prostate cancer and treatments for infertility and erectile dysfunction, but even there they establish a useful framework for discussion. Scarcity of resources need not be a leading conceptual consideration in discerning a basic minimum. More important are the societal elements that generate the cultural moral right to a basic minimum.     

The Illegal Way In and The Moral Way Out

At the heart of the current debate about immigration we find a conflict of convictions. Many people seem to believe that a country has a right to decide who to let in and who to keep out, but quite often they appear equally committed to the view that it is morally wrong to expel someone from within the borders of their country if that would seriously jeopardise the person in question. While the first conviction leads to stricter border controls in an attempt to prevent would-be immigrants from entering the country illegally, the latter conviction ensures that aliens with a legitimate claim on protection will not be removed forcibly. It is not strange, therefore, that the task of pinning down a morally sound immigration policy is such an elusive enterprise.
In this paper I take it for granted that no electorate would be prepared to accept the kind of policy they ought to, and that we in consequence will continue to let in as few immigrants as is currently the case. Given this constraint I argue against two common assumptions concerning a viable immigration policy. First, granted that certain conditions are satisfied, professional smugglers should not face legal sanctions for bringing asylum seekers to a potential host country. Second, countries that limit immigration should not treat people seeking family reunion preferentially or on a par with other immigrants, but rather act so as to maximise the number of refugees allowed to enter.     

Constitutional Privilege and Constituting Pluralism: Religious Freedom in National, Global, and Legal Context

Lori Beaman argues that religious freedom in Canada and the United States is well established in theory (or myth) but limited in practice, privileging Protestantism in particular and varieties of Christianity in general. Focusing on the treatment of other religions in the courts of the two countries, she defends the hypothesis that these legal systems tend to reinforce the hegemony of Christianity, using this as an implicit model of what constitutes a religion, and thereby maintaining the marginalization and restricting the freedom of other religions. The present article sets Beaman's arguments in a wider global context, exploring the extent to which Christianity does and does not serve as a global standard for religion; and addressing the question of why issues of religious freedom so frequently end up being the subject of legal judgment and political decision. The main conclusions drawn from this global contextualization are that maintenance of some kind of religious hegemony is the rule all across global society, not just in Canada and the United States, and that unfettered freedom of religion or genuine religious pluralization is correspondingly rare, if it exists anywhere. Moreover, it is argued that such limitations, frequently expressed in legal judgments and political decisions, are more or less to be expected because they flow from the peculiar way that religion has been constructed in the modern and global era as both a privileged and privatized, as both an encompassing and marginalized social domain. The article thereby simultaneously reinforces and takes issue with Beaman's position: the modern and global reconstruction of religion invites its infinite pluralization at the same time as it encourages its politicization and practical restriction. Religions act as important resources both for claims to inclusion and for strategies of relative exclusion.     

Treating minorities with fatwas: a study of the Ahmadiyya community in Indonesia

The term “minority religious community” in the Muslim country of Indonesia refers not only to those embracing religions other than Islam, but also to minority groups like the Ahmadiyya. Recently, the treatment of Ahmadis has been worse than the treatment of non-Muslims. This article, therefore, intends to study the status of ‘deviant’ groups under Islamic law and the treatment of them in Muslim society. Specifically, this article addresses the following questions: How did ulama in the past define and treat minority groups? How do contemporary Sunni ulama define and treat the Ahmadiyya? What is the status of this group under Islamic law? Are they apostates, heretics, or unbelievers? And what are the legal consequences of these charges? To answer these questions, this article employs two methods. First, for theoretical treatment of minority groups in the past, this article focuses its analysis on al-Ghazāli’s Fay?al al-tafriqa and Fa?ā’i? al-bā?iniyya. Second, following a discussion of classical Islam, the article moves to contemporary time by analyzing fatwas against the Ahmadiyya from five institutions: the Rābi?a al-‘?lam al-Islāmī, Majelis Ulama Indonesia (MUI), Muhammadiyah, Council of the Islamic Fiqh Academy of the Organization of Islamic Cooperation (OIC), and Nahdlatul Ulama (NU). This article argues that, first, fatwas against the Ahmadiyya issued by these institutions were intended as a device to sustain orthodoxy of umma and, second, orthopraxy or devoutness in observing religious rituals, as practiced by the Ahmadis, does not exempt them from the charge of apostasy because theologically they are believed to deviate from orthodox beliefs.     

Publics and Populations: The Politics of Ancestry and Exchange in Genome Science

While researchers collect and assemble relevant populations for genome studies, they are also, along with project designers and managers, interested in assembling publics. The public holds significant symbolic and discursive appeal for large-scale genome science. This is particularly the case in projects that collect or study aspects of human genome variation where histories of biological racism continue to cast a shadow over the promises of genomic medicine. In one of Canada's first large-scale biobanks, French Canadians, who are understood as a genetically close or homogenous population, are contrasted with what are referred to as ‘immigrants’ and ‘Québecers from various ethnic and racial backgrounds’ in public engagement and consultation forums. These latter groups, thought to provide a form of diversity, both in their views and their biology, are harnessed in the consultation practices as well as in the branding of the biobank. Within the local area of sample collection, the already constructed and available ways to categorise groups provide a powerful frame to narrate the relationship between the public and genome science. The process of making and consulting niche publics not only naturalises particular narratives of national belonging but also enables forms of exchange and sharing in international genome science. Just as assembling populations forms a central component of genome science, displays of publicness are integral for economies of exchange in genome science.     

Immigrant Acculturation and Transnationalism: Israelis in the United States and Europe Compared

This article examines relations between social integration into host societies, religio‐ethnic acculturation into group belonging, and ties to home country among Israeli émigrés in the United States and Europe. I use data from a 2009–2010 Internet survey into which I incorporated country‐contextual characteristics. The results of multivariate analyses show that a social integration combining duration of residence abroad and local citizenship enhances religio‐ethnic identification. Another measure of integration, social networks, deters group behaviors. All measures of general integration inhibit attachment to the home country, whereas religio‐ethnic acculturation is largely insignificant for transnationalism. The religiosity of the new country does not influence immigrants’ religio‐ethnic patterns or homeland attachment. Insofar as group size is a significant determinant of particularistic behaviors, it weakens them. The more policy‐based opportunities newcomers receive, the more they dissociate from group behaviors and homeland ties. Irrespective of individual and contextual factors, living in the United States encourages group affiliation more than living in Europe does. The results are discussed in reference to four working hypotheses—marginalization, integration, assimilation, and separation—and from a U.S.‐European comparative perspective.     

On the relation between moral, legal and evaluative justifications of pre-implantation genetic diagnosis (PGD)

In Germany the question whether to uphold or repeal the judicial prohibition on Pre-implantation Genetic Diagnosis (PGD) is being debated from quite different standpoints. This paper differentiates the major arguments according to their reasons as a) moral, b) evaluative (i.e. cultural/religious), and c) legal. The arguments for and against PGD can be divided by content into three groups: arguments relating to the status of the embryo, focusing on individual actions in the implementation of PGD, and relating to the foreseeable or probable consequences of PGD. In Germany, from a legal perspective, the status of the embryo does not permit the intervention of PGD; from a purely moral perspective, a prohibition on PGD does not appear defensible. It remains an open question, however, whether the moral argument permitting PGD should be restricted for evaluative (cultural) reasons. The paper discusses the species-ethical reasons, for which Jurgen Habermas sees worrisome consequences in the wake of PGD to the extent that we comprehend it as the forerunner of a 'positive eugenics'. It would so disrupt the natural preconditions of our universal morality. The question of whether to prohibit or allow PGD is not merely a question of simple moral and/or legal arguments, but demands a choice between evaluative, moral and (still to be specified) species-ethical arguments, and the question remains open.     

Self-Compassion,Stress, and Coping

People who are high in self-compassion treat themselves with kindness and concern when they experience negative events. The present article examines the construct of self-compassion from the standpoint of research on coping in an effort to understand the ways in which people who are high in self-compassion cope with stressful events. Self-compassionate people tend to rely heavily on positive cognitive restructuring and less so on avoidance and escape but do not appear to differ from less self-compassionate people in the degree to which they cope through problem-solving or distraction. Existing evidence does not show clear differences in the degree to which people who are low versus high in self-compassion seek support as a coping strategy, but more research is needed.     

Influence of temporal context on value in the multiple-chains and successive-encounters procedures

This set of studies explored the influence of temporal context across multiple-chain and multiple-successive-encounters procedures. Following training with different temporal contexts, the value of stimuli sharing similar reinforcement schedules was assessed by presenting these stimuli in concurrent probes. The results for the multiple-chain schedule indicate that temporal context does impact the value of a conditioned reinforcer consistent with delay-reduction theory, such that a stimulus signaling a greater reduction in delay until reinforcement has greater value. Further, nonreinforced stimuli that are concurrently presented with the preferred terminal link also have greater value, consistent with value transfer. The effects of context on value for conditions with the multiple-successive-encounters procedure, however, appear to depend on whether the search schedule or alternate handling schedule was manipulated, as well as on whether the tested stimuli were the rich or lean schedules in their components. Overall, the results help delineate the conditions under which temporal context affects conditioned-reinforcement value (acting as a learning variable) and the conditions under which it does not (acting as a performance variable), an issue of relevance to theories of choice.     

Consultation Contracts

Consultants enter into legal contracts each time they agree to a consultation arrangement outside of their regular work setting. They need to understand the legal context of contracts within which they perform their services and recognize the benefits a written agreement provides. Counselors often provide consultation services as a regular part of their job responsibilities. In such situations, a separate legal contract is not formed when a consultation relationship is created. A written understanding of the consultation arrangement, however, can be beneficial to the consultant and consultee even though a legal contract does not exist.     

Enter the prenuptial: A prelude to marriage or remarriage

Although prenuptial agreements have existed in the United States for many decades, they did not catapult into the public foreground during the courtship/engagement/just before marriage or remarriage stage of the life cycle until the 1980s. In the past decade, this particular kind of document has received a great deal of attention in the media, in lawyers' offices, and in courtrooms. This article explores the raison d'ěre of antenuptials and their psychological, familial, and legal ramifications. Some guidelines are offered to defuse the high anxiety they arouse in some individuals as well as to provide signals as to when the contents of the prenuptial herald “danger” ahead. The potential positive aspects of both psychosocial prenuptial accords and legal prenuptial agreements are explored as is the role of the psychologist as therapist or “mediator” when a prenuptial is in the offing.     

Life Satisfaction and Keeping Up with Other Countries

Micro income studies show that relative income of individuals—with respect to their colleagues, friends, etc.—affects their life satisfaction significantly. This paper attempts to extend these studies by using the idea that people may compare their well-being not only to well-being of their home country folks but also to well-being of other country citizens. Using data from national surveys of 55 countries, carried out from 1973 to 2011, we find that average life satisfaction of a country is significantly affected from how much that country is deprived of income compared to richer countries in the world. Furthermore, per capita income of a country only matters as far as it affects its relative position in the global income distribution. This result, gaining statistical significance after 1990s, is a potential explanation for the paradox that even though richer countries tend to be happier compared to poor ones, a country does not necessarily get happier as its income increases.     

Application of Megan's law to juveniles

This article examines (a) the history of registration and notification statutes for sex offenders and the concerns and legal challenges they have faced, (b) psychology's limited knowledge about normal versus abnormal sexual development, and (c) research that suggests rates of recidivism for sexual offenses may be lower for juveniles than for adults who have been discovered and received punishment and/or treatment. Although the behaviors of juvenile and adult sex offenders may appear similar, the underlying mechanisms triggering the behaviors may be different or juveniles' patterns of behaviors may be less established, accounting for some of the observed differences in recidivism rates. Although the authors recognize the critical objective of protecting victims and potential victims, this article focuses on intervention efforts with juvenile sex offenders.     

一名宗教信仰者输血引发的思考

输血挽救了无数危重患者的生命,但少数宗教信仰者在自己或其家属急需输血时却拒绝输血治疗,而目前我国的法律法规在这一方面尚无明确规定,在此种情况下是否输血,医师处于两难的选择,也较易引起医患纠纷,为此建议我国卫生及其司法部门尽快制定相关法律法规,使医务工作者,在遇到此类问题时有章可循,有法可依。     

Custody Disputes and Alternative Religions in the Courts of England and Wales

The courts in England and Wales have repeatedly claimed that they occupy a position of religious neutrality when faced with a case involving parties from two differing religions. While this assertion may well be true, when established, traditional religions are involved, it does not appear to be so clear cut, when one of the religions could be described as a ‘new religious movement’ or an ‘alternative religion’. Perhaps the most telling area of law in which to examine the courts’ alleged neutrality is in custody disputes in family law, as it is in these cases that the religious practices of the parents have sometimes become a factor in the case and judges have been more likely to express their opinion of such religious practices. This article analyses the approach of judges to such disputes and demonstrates that the judges tend to maintain a bias towards Judaeo-Christian morality.     

4～6岁儿童对“偶得物品”与“拥有物品”的分享行为

采用被试内设计法,在三种实验条件下考察180名4～6岁儿童的分享判断及其对“偶得物品”与“拥有物品”的分享行为的发展。结果发现:(1)儿童在对分享故事情境进行不充当角色的判断时,90%的4岁儿童和100%的5岁、6岁儿童能做出正确判断。当他们进行充当故事中人物角色的判断时,4岁儿童判断的正确率降低到81%,5岁和6岁儿童的判断无变化。(2)4岁儿童中大约四分之一的人能够把在实验室情境中偶然得到的、自己喜欢的物品让给未得到该物品的同伴分享,能够这样做的5岁儿童大约有一半,而6岁儿童能够这样做的人达到七成以上,从4岁到6岁,发展趋势非常明显。(3)在对“自己拥有的”物品的分享上,大多数4～6岁儿童都不能将其让给在竞赛中失败、未获得该物品的同伴一同分享。(4)儿童在对分享情境的判断与他们的真实分享行为之间存在着不一致现象。