Huntington's disease and the law

Huntington's disease (HD) is a relentlessly progressive and fatal neurological condition that is inherited. It has serious and disabling physical and mental components. As such, it impacts upon those who have HD, those with the potential to inherit it, and those who care for those with HD in a wide variety of ways. These can have many legal ramifications including in relation to evolving impairments of capacity which can have an outcome in terms of involuntary status as mental health patients, testamentary capacity and the need for guardianship and administration. It can have effects upon fitness for parenting, obligations for spousal maintenance, and the quantum of compensation from a tortious incident to which a person is entitled. It has repercussions for criminal liability and culpability. This article reviews case law from a number of countries in relation to such matters, noting the broader radiation to others of the effects of HD, and reflecting on the need for legal and medical professionals to be aware of the legal consequences of HD for them to be able to discharge their responsibilities holistically, sensitively and informedly.     

The legal ethics of pediatric research

Since the mid- to late 1990s, the scientific and medical research community has sought to increase its access to healthy children for research protocols that involve harm or a risk of harm. This move reverses longstanding policy within that community generally to exclude healthy children from such protocols on the grounds that the research as to them is non-therapeutic, that they are particularly vulnerable to research-related abuses, and that they are unable themselves to give informed consent to their participation. The research community's new posture has been supported by prominent pediatric bioethicists who have argued that unless healthy children are included as research subjects in harmful or risky research, the pediatric population will continue to suffer relative to the adult population in the extent to which it benefits from modern advances in science and medicine. In their view, it is possible for the research community to self-administer a rule that strikes a balance between protecting healthy children from research-related abuses and allowing their inclusion in cutting-edge pediatric research. In this scheme, parental consent is central to the research community's claims about child protection. This Article explores the flaws inherent in this ethics of pediatric research. Specifically, it challenges the view from ethics that the law permits parents to consent to their children's inclusion in harmful or risky research to the extent that related invasions would meet legal maltreatment standards. More broadly, it challenges the movement to increase access to healthy children for harmful and risky research on the ground that it risks two important regressions: First, in its willingness to risk harm to individual children in the interests of the group, it threatens the progress the law has made in its development of the concept of the child as an individual worthy of respect in his or her own right, a concept that imagines parents as fiduciaries and that includes strong protections against invasions of bodily integrity. Second, in its failure to assure that the burdens of non-therapeutic research are not placed disproportionately on children of lower socioeconomic and minority status, it violates the antidiscrimination principle, which has only begun to make good on its promise of equal treatment for all children. Ultimately, this Article argues that harmonization of the rules governing pediatric research with the law of child protection and parents' consent authority is the best way to assure that children are protected in the research setting in these respects and to the same extent they are otherwise in the society.     

Indirect Crimes

Both law and morality routinely distinguish between direct wrongs of causing harm oneself and indirect wrongs of contributing to another’s harmful actions. This article asks whether this distinction matters for the purposes of a theory of criminalisation. It argues that, in some respects, the distinction matters less than is often supposed: generally, the potential future actions of others have at least some relevance to what we ought to do. However, it is morally significant that criminal liability for indirect wrongdoing can make our freedom to do valuable things contingent upon others’ failure to comply with their moral obligations. This raises substantial concerns of autonomy and fairness that tell against the creation of some – but by no means all – indirect crimes.     

Masculine responsibility across generations: living arrangements in a Norwegian parish around 1900

This article researches living arrangements longitudinally on the basis of census materials and church records from around 1900 in a Norwegian parish. We are interested in patterns of obligations and expectations between generations, and to what extent these were related to rules of inheritance practices. We hypothesize that the parity of children co-residing with elderly fathers in the census reflects expectations and attitudes towards filial responsibility. Based on linking the census records of elderly fathers to their fertility history in the church records, the article indicates that traditions in the circumpolar north differed from the usual practice of primogeniture among countries in the Germanic cultural area, including most of Norway. Irrespective of the father’s marital status, the majority of children living with their elderly fathers were sons. One important reason for this is the masculine character of the fisheries, where the transfer of knowledge from father to son was crucial for successful economic results, thus promoting masculine obligations across generations, strong enough to have a significant effect upon living arrangements.     

Ethical and legal issues in suicide research

Moralist, libertarian and relativist ethical positions concerning suicide and its prevention are presented in order to clarify premises upon which ethical issues in suicide research may be resolved. Ethical concerns are differentiated from legal considerations and the implications of the vulnerability of suicidology research participants are discussed. Specific issues that arise in design, choice of participants, interpretation, diffusion of results and evaluative research are treated. These include: experimental methodologies, obtaining informed consent, deception and disclosure, studying innovative and unproven interventions, unknown consequences of participation, rescue criteria, disclosure of information to third parties, research with special populations, risks in publicizing results and measuring the value of human life. When specific legal obligations are lacking, ethical premises concerning the acceptability of suicide and obligations to intervene may influence research protocols.     

Vaccination and other altruistic medical treatments: should autonomy or communitarianism prevail?

The publication of a report into a case where an organ donor's constraints on the race of potential recipients raises questions about whether respect for autonomy or communitiarianism should prevail in altruistic medical procedures. This article briefly reviews how autonomy and communitarianism are balanced in cadaveric and live organ donation, bone marrow donation, gamete donation, blood donation and vaccination. It criticizes vaccination policy for ostensibly respecting patient autonomy yet in practice compromising that autonomy in various ways. Vaccination is properly viewed as an altruistic medical procedure because some vaccines are of more good to society than to the vaccinee, who runs associated health risks. The conclusion is that there is a spectrum of attitudes to the value of autonomy, depending principally upon the invasiveness of the procedure. In most cases the autonomy-communitarianism balance is satisfactory, but this is not so in respect of cadaveric organ donation and vaccination. The article proposes that cadaveric organ donation should be governed by the communitarian law of well-publicised presumed consent. It proposes two alternatives for vaccination: that vaccination should be compulsory or, preferably, that procedures be modified so that parents have real autonomy in their decisions whether to vaccinate their children.     

Legal prerequisites for clinical trials under the revised Declaration of Helsinki and the European Convention on Human Rights and Biomedicine.

Biomedical research is a perennially controversial subject. While the provisions of the Revised Declaration of Helsinki enjoy world-wide acceptance, they are increasingly placed in question--not least by the Council of Europe's Bioethics Convention, which allows non-therapeutic research in restricted cases on those incapable of giving informed consent. Taking as its starting-point the fundamental conflict between the general interest in research and the individual interests of the patients concerned, this article analyses the conditions under which medical experimentation on human beings is permissible. The article recognises the model of risk/benefit analysis and the doctrine of informed consent as equally valid core principles which do not conflict with restricted, non-therapeutic research, whether on patients who lack the capacity to consent or in placebo-controlled trials.     

Family, Social Inequalities, and the Persuasive Force of Interpersonal Obligation

To date, the privatization of the costs of social inequalitiesfor women and children has been criticized predominantly froma policy perspective. This article seeks to make a strongercase against remedying social inequalities through private lawobligations by addressing the theoretical difficulties withsuch privatization with a particular focus on familial obligations.I take my core examples from the current Canadian understandingof the spousal and child support obligations. My analysis proposes and proceeds on the basis of a new discoursefor obligations traditionally grouped together as "Family Law"obligations: first, interpersonal obligations, which arise fromand tie together two citizens through either a single interactionor through their relationship as a whole; second, social obligations,which are owed by the community as a whole to individual citizens. I argue that the persuasive force of the focus on an individual'sresponsibility for another's financial need has obscured thereality of the state's obligation, the broader social obligation,to respond to this need. I conclude with a discussion of theconsequences of my analysis for the future of the spousal andchild support obligations. If we deny an expanded role to thesesupport obligations, can we do so in a way that avoids leavingthe impoverished in an even more precarious position?     

Risks and Realities of Working with Alienated Children

Involvement in custody cases that include accusations of parental alienation—whether as an evaluator, expert witness, lawyer, judge, therapist, provider of a specialized intervention, or researcher—incurs both professional and personal risks. Some risks relate to false negative or false positive identifications of parental alienation that can lead to regulatory agency complaints and public condemnation by the parent who feels wronged by the case outcome. Other risks stem from providing services in an emerging area of practice and working with children who overtly oppose repairing the relationship with their rejected parent. These risks include: unfounded accusations of mistreating children; negatively biased commentary and sensationalist attacks in the media and in social media, professional conferences and journals, and in courtroom testimony; harassment, vilification, and invasion of privacy; threats of violence and public humiliation; shunning and rumor spreading by colleagues; and complaints to regulatory agencies. This article examines circumstances, beliefs, and dynamics that give rise to these risks, suggests precautions to reduce the risk of false accusations against professionals, and offers recommendations for dealing with regulatory agencies. Criticisms that a court or service provider has mistreated a child merit careful scrutiny in the context of the case evidence and empirical data. While some interventions for alienated children raise legitimate concerns, others have been maligned by anecdotal complaints that studies show do not represent the experience of most participants.     

Preventing mother-to-child transmission: landmark decision by South African court

On 14 December 2001, the High Court of South Africa delivered its judgment in Treatment Action Campaign et al v Minister of Health et al, ruling that the government was in breach of its constitutional obligations and must promptly develop and implement a comprehensive national program to prevent mother-to-child transmission of HIV, including making antiretroviral drugs available for this purpose. This article summarizes the legal arguments and the outcome of a case that is of global significance in holding governments accountable for their obligations to progressively realize the human right to health.     

Criminal Case Outcomes, Incarceration, and Subsequent Intimate Partner Violence

Given the centrality of court interventions to the U.S. response to intimate partner violence (IPV), it is crucial to evaluate their impact on reabuse. To do so, this study examined whether female IPV victims’ experiences of abuse in the year following a criminal court case against their partner varied by case outcome or by whether the batterer had or had not been incarcerated. Consistent with prior research, we found no main effect differences in reabuse trajectories by court case outcome or by incarceration. We also examined variables that might moderate the impact of case outcome and incarceration on reabuse and found that although batterer legal history did not affect the impact of case outcome, his age, Time 1 employment status, the couple’s Time 1 living arrangement, and duration of abuse did interact with case outcome. No variables tested moderated the relationship between incarceration and reabuse over time. Findings suggest that in certain cases there may be benefits to case outcomes that leave potential consequences hanging over the offender’s head. These results also add to the growing body of evidence questioning the efficacy of one-size-fits-all approaches to IPV cases.     

TOUGH LOVE? CRIME AND PARENTAL ASSISTANCE IN YOUNG ADULTHOOD*

Although informal social reactions to crime are key to many criminological theories, we know little about how readily offenders’ significant others reject and withdraw support from them. I explore the limits of others’ willingness to help offenders by studying parents’ financial assistance of grown offending and nonoffending offspring. I use data from the National Longitudinal Study of Adolescent Health and from the 1997 cohort of the National Longitudinal Survey of Youth to show that, despite their strained relationships with their parents, young adult offenders receive more parental assistance than do their nonoffending peers and even their own nonoffending siblings. This is not because offenders have fewer financial resources, but it is partly because they tend to have a variety of other life circumstances that trigger parental assistance. I suggest that parents’ reactions to offending offspring are limited by role obligations and norms of familial duty.     

The Psychological Impact of Traumatic Events on Children

The past decade has seen accumulating research detailing the psychological consequences of a range of traumatic events upon children and young people. This paper summarizes some of the psychological consequences, including posttraumatic stress disorder, and describes the presentation and course in children. Treatment studies are reviewed and the need for further research with children involved in a range of events highlighted. In particular, there is a need to develop and evaluate early interventions and to identify factors that mediate or moderate negative consequences.     

Sub-Optimal Justification and Justificatory Defenses

Justificatory defenses apply to actions that are generally wrong and illegal—mainly since they harm people—when they are (exceptionally) justified—usually since they prevent (more serious) harm to others. A strict conception of justification limits justificatory defenses to actions that reflect all pertinent principles in the optimal manner. A more relaxed conception of justification applies (also) to actions that do not reflect all pertinent principles optimally due to (unjustified) mistake but are not too far from this optimum. In the paper, I consider whether justificatory defenses should reflect the strict conception of justification or a more relaxed conception of justification. This question is important since often the relevant actions are not strictly justified, while the alternative of an excuse is frequently irrelevant or does not provide an appropriate solution. Reflection on this question raises the following dilemma: On the one hand, the strict interpretation seems too harsh, especially with regard to legal (particularly criminal) liability. On the other hand, it is difficult to explain the basis for a more relaxed conception of justification. I conclude, first, that justification—and accordingly wrongfulness—is a matter of degree and that the strictly justified action is merely the peak of a continuum, and, second, that a practical (negative) reaction is in place only with regard to actions whose wrongness is above a minimal threshold.     

Godparents,witnesses, and social class in mid-nineteenth century sweden

“Providing for the children's future” is a problem that parents should solve by the time children reach adulthood. In the case of a peasant family, the solution involved giving children part of the estate. In the Pyrénées, landownership as well as social status were bequathed to a single heir, while the other children had to leave the family house. What became of these others and where do they go? A small village from the Adour plain has been chosen to show how the system functioned during the nineteenth century, which was replete with economic crises. The study shows that roles and the duties connected with them changed during this century: internalization of local social norms was no longer going to be as successful as in the past. Also, the meaning of the family changed. Earlier, a simple domestic group working for the House, the family began to take on more autonomy as a production unit and started a long trend towards being a haven, a protector of the weak, old and unmarried members of the family.     

Ireland and medical research with minors: some medico-legal aspects

The practice of medical research with minors in Ireland consist of practices pertaining to therapeutic and non-therapeutic medical research. Clinical trials (a category of therapeutic research), is governed by legislation. However, any other therapeutic research (non-clinical trials research) and non-therapeutic research, e.g. observational medical research such as a longitudinal study of children or non-therapeutic research such as blood sample collection for analysis of cause of disease, are unregulated by legislation. This, article will outline and describe some of the medico-legal issues involved in both types of research and will comment on matters such as what national law exists, how the directive on good clinical practice has been implemented, what guidelines, if any, exist.     

VISITATION AND CHILD SUPPORT GUIDELINES

Fabricius and Braver argue that nonresident fathers incur appreciable visitation expenses and that their child support obligations should be reduced accordingly. To assess whether fathers incur "appreciable" expenses requires data from mothers and fathers on expenditures in dollar terms rather than data from college students on items kept in the nonresident father's house. The Fabricius and Braver data also overstate the degree to which all divorced fathers do anything for their children. Representative data indicate that father visitation declines substantially over time. Father's postdivorce, post–child support standard of living remains twice that of mothers and children. The cliff model—making adjustments for visitation only in the rare cases of very high shared physical custody—is sensible policy.     

An Evaluation of a Parent Group for Survivors of Intimate Partner Violence

Researchers continue to demonstrate the significant physical and mental health consequences to women who experience intimate partner violence (IPV) and children exposed to IPV. However, more research is needed to examine group interventions that support mothers, their children, and the parent-child relationship in the aftermath of IPV. We analyzed data provided by women who participated in a 12-week parent group. The objectives of the parent group were for mothers to better understand their children’s developmental experience of IPV and to break the secret of domestic violence in their family. The sample included 15 women who completed the group and the baseline, midpoint, and endpoint surveys. Eleven of these women also completed a semi-structured interview three months following the group. Survey items and interview topics focused on group process and outcomes. Women reported the group helped them feel less alone in their experience of IPV and they valued having a space to learn and discuss new concepts that related to their experiences and their children’s experiences of IPV. They reported more confidence in identifying their child’s feelings and being a safe person to whom their children could express their anger. Women also reported they developed greater coping and communication tools, and a strengthened mother-child bond, through group participation. Group interventions are an important format for learning and sharing for some mothers who have experienced IPV, though more evaluation is needed on what components of these group interventions are the most supportive of mothers’ healing and growth.

     

California expands the duty to warn patients exposed to and infected with HIV. Reisner v. Regents of the University of California

There is still no general definitive guide for hospitals and other health care providers concerning the extent of their duty to warn third parties of a patient's HIV status. However, even in states like California that have statutorily eliminated any duty to directly inform third parties, the Reisner case clearly indicates that liability to third parties may arise indirectly based on a failure to warn HIV-exposed or -infected patients of their status and the risks of communicating the virus to others. Accordingly, health care providers should take several actions: 1. Ascertain, with the assistance of legal counsel, the precise dictates of applicable state statutes and case law regarding (a) a provider's obligation to warn HIV-exposed or -infected individuals of the potential of communicating the virus to others; (b) additional statutory requirements such as notification of public health authorities; and (c) whether notice to third parties at risk of exposure from the patient is required or even permitted. 2. Develop and implement written policies regarding notification and counseling of exposed or infected patients, including counseling patients on the risks of communicating the virus to third parties; and 3. Develop and implement written policies regarding permissive or mandatory notification and counseling of exposed or infected third parties. In this context, providers should be aware that patient confidentiality and privacy laws may prohibit disclosure of the identity of exposed or infected patients to third parties.