Future Autonomy Research Articles

Autonomy, Natality and Freedom: A Liberal Re-examination of Habermas in the Enhancement Debate

Jurgen Habermas has argued that carrying out pre-natal germline enhancements would be inimical to the future child's autonomy. In this article, I suggest that many of the objections that have been made against Habermas' arguments by liberals in the enhancement debate misconstrue his claims. To explain why, I begin by explaining how Habermas' view of personal autonomy confers particular importance to the agent's embodiment and social environment. In view of this, I explain that it is possible to draw two arguments against germline enhancements from Habermas' thought. I call these arguments ‘the argument from negative freedom’ and ‘the argument from natality’. Although I argue that many of the common liberal objections to Habermas are not applicable when his arguments are properly understood, I go on to suggest ways in which supporters of enhancement might appropriately respond to Habermas' arguments.

Guidelines for return of research results from pediatric genomic studies: deliberations of the Boston Children’s Hospital Gene Partnership Informed Cohort Oversight Board

Approaches to return individual results to participants in genomic research variably focus on actionability, duty to share, or participants' preferences. Our group at Boston Children's Hospital has prioritized participants' preferences by implementing the Gene Partnership, a genomic research repository, based on the "Informed Cohort" model that offers return of results in accordance with participant preferences. Recognizing that ethical oversight is essential, the Gene Partnership Informed Cohort Oversight Board was convened in 2009. Over 3 years, the Informed Cohort Oversight Board developed guidelines for the return of individual genomic research results. The Informed Cohort Oversight Board defined its guiding principles as follows: to respect the developing autonomy of pediatric participants and parental decision-making authority by returning results consistent with participants' preferences and to protect participants from harm. Potential harms and strategies to eliminate harm were identified. Guidelines were developed for participant preferences that consider the child's development and family dynamics. The Informed Cohort Oversight Board agreed that to prevent harm, including harms related to interfering with a child's future autonomy, there will be results that should not be returned regardless of participant preferences. The Informed Cohort Oversight Board developed guidelines for the return of results that respect the preferences of parents, children, and adult participants while seeking to protect against harm.

Life quality and health in adolescents and emerging adults with epilepsy during the years of transition: a scoping review

The aims of this study were to (1) search the literature in order to identify the challenges facing adolescents and emerging adults with epilepsy; and (2) categorize these issues within both the framework of the International Classification of Functioning, Disability and Health (ICF) and an empirical model of quality of life (QOL) in childhood epilepsy. We systematically searched PsycINFO, Ovid MEDLINE and Web of Science for studies reporting on QOL and health identified in people with epilepsy aged 12 to 29years. Studies were limited to those that were published in the last 20years in English, presenting the patient perspective. Data were extracted and charted using a descriptive analytical method. Identified issues were classified according to the ICF and QOL frameworks. Fifty four studies were identified. Another 62 studies with potentially useful information were included as an addendum. The studies highlight a range of psychosocial issues emphasizing peer acceptance, social isolation, and feelings of anxiety, fear, and sadness. The ICF and QOL constructs represent useful starting points in the analytical classification of the potential challenges faced by adolescents with epilepsy. Progress is needed on fully classifying issues not included under these frameworks. We propose to expand these frameworks to include comorbidities, impending medical interventions, and concerns for future education, employment, marriage, dignity, and autonomy.

Conflicts Between Religious or Spiritual Beliefs and Pediatric Care: Informed Refusal, Exemptions, and Public Funding

Although respect for parents' decision-making authority is an important principle, pediatricians should report suspected cases of medical neglect, and the state should, at times, intervene to require medical treatment of children. Some parents' reasons for refusing medical treatment are based on their religious or spiritual beliefs. In cases in which treatment is likely to prevent death or serious disability or relieve severe pain, children's health and future autonomy should be protected. Because religious exemptions to child abuse and neglect laws do not equally protect all children and may harm some children by causing confusion about the duty to provide medical treatment, these exemptions should be repealed. Furthermore, public health care funds should not cover alternative unproven religious or spiritual healing practices. Such payments may inappropriately legitimize these practices as appropriate medical treatment.

Prenatal Whole Genome Sequencing

AbstractWhole genome sequencing is quickly becoming more affordable and accessible, with the prospect of personal genome sequencing for under $1,000 now widely said to be in sight. The ethical issues raised by the use of this technology in the research context have received some significant attention, but little has been written on its use in the clinical context, and most of this analysis has been futuristic forecasting. This is problematic, given the speed with which whole genome sequencing technology is likely to be incorporated into clinical care. This paper explores one particular subset of these issues: the implications of adopting this technology in the prenatal context without a good understanding of when and how it is useful.Prenatal whole genome sequencing differs from current prenatal genetic testing practice in a number of ethically relevant ways. Most notably, whole genome sequencing would radically increase the volume and scope of available prenatal genetic data. The wealth of new data could enhance reproductive decision‐making, promoting parents' freedom to make well‐informed reproductive decisions. We argue, however, that there is potential for prenatal whole genome sequencing to alter clinical practice in undesirable ways, especially in the short term. We are concerned that the technology could (1) change the norms and expectations of pregnancy in ways that complicate parental autonomy and informed decision‐making, (2) exacerbate the deleterious role that genetic determinism plays in child rearing, and (3) undermine children's future autonomy by removing the option of not knowing their genetic information without appropriate justification.

Risk Factors Associated With Rehospitalization in the Elderly Using Chart-Abstracted Data and the New York State Patient Data System

Hospitalization is a significant risk for the elderly (65 years or older) and is the largest component of U.S. health care spending accounting for more than 35% of health care dollars (Folland, Goodman, & Stano, 2001). It is estimated that by 2030, the number of elderly will be more than double to 70 million (Centers for Disease Control and Prevention [CDC], 2010). Because 20% of our future population will be elderly with many suffering from chronic diseases, health care and hospital costs for this group are expected to increase substantially (Lamont, Sampson, Matthias, & Kane, 1983). Compared with the general population and driving these predictions, the elderly have significantly higher rates of hospital admission and readmissions and are responsible for most hospitalization days and expenses (Parker, 2005; Victor, Healy, Thomas, & Seargeant, 2000). In the United States (Elixhauser, Yu, Steiner, & Bierman, 2000) and the United Kingdom (National Health Service Information Centre Hospital Episode Statistics, 2006), the elderly account for approximately 36% of hospital admissions; in Australia, they account for 52% (Karmel, Lloyd, & Hales, 2007). In addition to the frequency and expense of hospitalization during inpatient stays, many elderly experience deconditioning and functional decline that affects their future independence, autonomy, and quality of life (Covinsky et al., 2003; Creditor, 1993; Hoenig & Rubenstein, 1991). Published research shows that of 60 functionally independent individuals 75 years or older admitted to the hospital from their home for acute illness, 75% were no longer independent on discharge including 15% who were discharged to nursing homes (Creditor, 1993; Lamont et al., 1983). Reducing length of stay and aggressive discharge policies have become important features of the hospital experience, yet readmission following discharge has become a familiar and frustrating problem and may result from avoidable hospital, and/or community service failures (Colledge & Ford, 1994). Prior hospitalizations increase the probability of future hospitalizations and by identifying and managing patient-level risk factors for rehospitalization, patients' health care and quality of life would improve, whereas morbidity, mortality, costs, and the rate of future hospitalizations would decrease (Colledge & Ford, 1994; Creditor, 1993). Developing a predictive model for rehospitalization risk is one method to describe the factors associated with elderly rehospitalization, identify those at risk, and target individuals for appropriate preventive interventions (Blackman, Kamimoto, & Smith, 1999). Such a model may also predict hospital utilization costs more accurately allowing hospitals to better anticipate staffing and resource needs to efficiently serve elderly patients. However, research has shown that a risk factor must have a much stronger association with the outcome than we ordinarily see in etiologic and epidemiologic research if it is to provide a basis for prediction in individual patients. Despite the strong association between the risk factor and the outcome, it does not follow that the risk factor provides a basis for an effective prediction rule for individual patients (Ware, 2006). OBJECTIVES The purpose of this study is to identify demographic and clinical factors associated with nonelective, all-cause rehospitalization within 120 days of an index admission in the elderly. METHODOLOGY Our sampling frame included all patients 65 years or older admitted to Saint Vincent Catholic Medical Centers (SVCMC) of New York for nonelective admissions between June 21, 2003, and June 20, 2004. For all patients admitted more than once during the study period, we counted each admission as unique. To avoid the possibility of seasonal variation on our sample, we employed a random proportional stratified sampling strategy using the date of admission to stratify the sample by season. …

Is Prevention Better than Cure? A Re-evaluation of the Potential Use of Nicotine Conjugate Vaccine in Children

Despite worldwide efforts to reduce the consumption of tobacco, legislative and educational measures have failed to eradicate the practice of cigarette smoking. Indeed, in many populations, particularly in the developing world, its prevalence is increasing. Consequently were alternative strategies to become available to address the problem, they would deserve serious consideration. One potential strategy which may become a real possibility in the future might be the vaccination of children against the pleasurable effects of nicotine. Were such a vaccine to become available, children who had been inoculated would be less likely to start smoking, and even if they did, would be able to quit more easily. However, as Hasman and Holm discussed, vaccinating against a behavior rather than a disease is not ethically unproblematic, and they concluded that inoculation of infants and young children with a permanently effective nicotine conjugate vaccine should not take place, as it robbed children of the right to a smoking future. In this article, I will re-evaluate some of their arguments, and will conclude that in fact the private and public goods that inoculation with a 'smoking vaccine' would produce, outweigh the possible impingements on future autonomy that may result from such vaccination programme. © 2011 The Authors.

Voicing the lifeworld: Parental accounts of responsibility in genetic consultations for polycystic kidney disease

When parents, who are carriers of or are affected by a genetic disorder, make decisions about the health risks faced by their children, there may be multiple factors to consider. These may include the medical benefits, the parents’ own experiences of learning about their genetic status, and the future autonomy of the child. Health professionals face the challenge of explaining the possible burdens as well as benefits of testing children, while promoting open communication within families about the risk of an inherited condition. While genetic consultations do not in themselves constitute decision making, parents nevertheless account for their actions and decisions in an attempt to display parental responsibility.In this paper we explore the accounting practices of parents in genetic consultations, focusing on how they articulate their responsibility with regard to testing their at-risk children for autosomal dominant polycystic kidney disease (PKD) and the communication issues surrounding the testing process and the disclosing of test results. Based on eight audio-recorded and transcribed genetic consultations from the UK, and drawing upon rhetorical discourse analysis, our findings suggest that (i) parents tend to foreground their practical ‘lifeworld’ considerations to justify their decisional actions; and (ii) there is considerable variation in the ways in which parents respond to information and advice offered by the professionals. The affected parent often presents their lifeworld concerns as outweighing, at least for the present moment, the longer term health benefits that might accrue to their children.

Parental Authority, Future Autonomy, and Assessing Risks of Predictive Genetic Testing in Minors

The debate over the genetic testing of minors has developed into a major bioethical topic. Although several controversial questions remain unanswered, a degree of consensus has been reached regarding the policies on genetic testing of minors. Recently, several commentators have suggested that these policies are overly restrictive, too narrow in focus, and even in conflict with the limited empirical evidence that exists on this issue. We respond to these arguments in this paper, by first offering a clarification of three key concepts—autonomy of the minor, future autonomy, and parental authority—which must be disentangled. We then respond to the arguments by noting the uncertainty of the value of predictive genetic information, and by assessing the psychosocial risks still involved in genetic testing of minors, which are also largely unknown. We conclude that the current consensus position is justified at this stage, in light of the predictions of harm resulting from genetic testing of minors that have not been adequately proved to be unwarranted.

The Parental Investment Factor and the Child's Right to an Open Future

The Parental Investment Factor and the Child's Right to an Open Future Dena S. Davis (bio) Parents have dreams for their children, sometimes quite specific and narrow. Musical families may assume that their children will choose an instrument early and devote so many hours to practice that other activities and even friendships are severely constrained. Ronald M. Green, a professor of ethics at Dartmouth, points to the many toddlers he sees at alumni events wearing "diminutive Dartmouth sweatshirts inscribed with their hoped-for graduation years."1 Society tolerates such dreams quite well. But should we also encourage access to genetic and reproductive techniques that allow for the creation of "babies by design," or what I will term directed procreation?2 And does it matter if these techniques require a large or small investment of parental time, money, and energy? Two methods of directed procreation now available include sperm sorting, which increases the odds of having either a boy or a girl, and preimplantation genetic diagnosis (PGD), originally developed to detect and avoid serious genetic conditions such as Tay-Sachs disease but suitable for sex selection and eventually other purposes, such as choosing children with athletic potential. Links have been discovered between specific athletic potential and variations of the ACNT3 gene, for example.3 Because changes in technology will soon permit whole genome embryo screening as a routine part of in vitro fertilization, parents testing embryos for conventional reasons such as avoiding lethal disease can choose to test for other traits at little additional cost. Indeed, some clinics that offer reproductive services report that they are beginning to receive requests for such services, and at least one has announced that it intends to begin to offer them in cases where the screening technology has progressed far enough to make it possible.4 Gene modification after birth is another way in which parents can increase the likelihood of having a child with the specific traits they desire.5 The argument for permitting directed procreation is grounded in the respect Western culture gives to reproductive liberty. Respect for procreative choices can be seen, for example, in the value-neutral ethic of genetic counselors and in the unregulated state of reproductive technology in the United States. One of its most articulate champions is John Robertson, who argues that procreative liberty is "an important moral right" based on the "centrality of reproduction to personal identity, meaning, and dignity."6 Even the U.K.'s Human Fertilisation and Embryology Authority, charged with policy decisions that severely constrain parental choice in assisted reproduction technology, nonetheless declares that its first loyalty is to procreative liberty. "The decision to have children is an area of private life in which people are generally best left to make their own choices."7 However, this respect, almost reverence, for autonomy in reproduction also grounds reasons for limiting directed procreation. The robust respect for parental autonomy ought to be complemented by a respect for the autonomy of the future child as well. One way of framing this concern is to appeal to a child's "right to an open future." Parents so fixated on the importance of having a girl, or a musician, or an athlete, will find it extremely difficult to be open to the child's own interests and natural direction. Parents who go to great trouble to have a child with perfect pitch may find it very hard when the child spurns the piano for the basketball court. Parents who go to great lengths to have a girl—even and perhaps especially if it is to "balance" a family in [End Page 24] which there are already sons—may want a child not merely with XX chromosomes and a female anatomy, but a daughter who will exhibit certain predetermined gender characteristics as well.8 Directed Procreation as a "Wake-Up Call" Some will argue that we should not single out directed procreation as bearing unique risks to the child's future autonomy but instead tolerate it to the same extent that we tolerate religious education, Dartmouth sweatshirts, and pink flowered wallpaper for baby girls. Parents certainly do often have strong expectations that children will join the family business, attend...

Parental Rights: A role-based approach

Both parents and children have strong interests associated with the childrearing process. Children have an interest in being raised in a particular manner, while parents have an interest in parenting in a particular manner. Whose interests should serve as the foundation for childrearing rights? Although parents have an interest in rearing their children as they see fit, no rights follow from that interest. Parental interests generate a right to become a parent, but they do not determine the scope and content of the childrearing rights that attach to this role.The rights that characterize the parental role are grounded solely on the interests of children. While childrearing rights allow parents latitude in interpreting how to parent, and exclude others from intervening, they are limited by the considerable constraint that they cannot undermine their children's future autonomy.

Direct-to-consumer genetic testing: more questions than benefits?

A plethora of genetic tests for susceptibility to common complex disorders have made their way onto the market. Groceries, clothing, hardware equipment, plane tickets and, now, even genetic tests can be ordered directly over the internet, from the comfort of your own home, without ever seeing a physician. Is this simply a natural progression, following in the footsteps of home pregnancy tests and blood-pressure monitors, which many people would admit do fulfill a certain niche and accomplish a lot of good for health-conscious consumers? After all, genetic testing is at the root of personalized medicine within the context of specific drug responses (pharmacogenetics). There are examples of genetic variants that do have a significant and clinically relevant effect on drug response; therefore, testing for them can lead to more efficient and cost–effective treatments [1]. However, there are many more examples with questionable validity and usefulness, so this begs the question: do direct-to-consumer (DTC) genetic services, which allow consumers to completely bypass the traditional healthcare system, do more harm than good? Direct-to-consumer genetic testing can be understood as including two related aspects: first, the advertising of genetic tests directly to consumers; and second, the direct access or ordering of genetic tests without the intermediate of a healthcare professional [2]. Although both aspects are equally important and do raise important ethical issues, they differ sufficiently to warrant separate analyses. This editorial will focus solely on DTC access to genetic testing. Other publications have tackled the issue of advertising [3,4]. Over 1100 genetic tests are available clinically and several hundreds are available in research settings. Although most genetic tests are still only available through a healthcare provider, a growing number of tests

Self-pain enmeshment: Future possible selves, sociotropy, autonomy and adjustment to chronic pain

The aims of this study were to replicate and extend previous observations on the relationship between enmeshment of the self and pain and measures of adjustment [Morley et al., Possible selves in chronic pain: self-pain enmeshment, adjustment and acceptance, Pain 2005;115:84–94], and to test the hypothesis that individual variation in motivational preferences interacts with enmeshment. 82 chronic pain patients completed standardized self-report measures of depression, anxiety, acceptance and the possible selves interview which generated measures of their hoped-for (own and other perspectives) and feared-for selves. They made judgments about the conditionality of each self on the continuing presence of pain as a measure of self-pain enmeshment. A series of hierarchical regression analyses, that adjusted for demographics, pain characteristics and disability, confirmed the relationship between self enmeshment and depression and acceptance. When anxiety was considered, there was no main effect for any of the self aspects but there were specific interactions between the hoped-for (own) and (other) selves and two motivational preferences – autonomy and sociotropy.

Attitudes regarding carrier testing in incompetent children: a survey of European clinical geneticists

The aim of this study is to gather information from European clinical geneticists about their practices and attitudes with regard to carrier testing in incompetent children. European clinical institutes where genetic counseling is offered to patients have been contacted. One hundred and seventy-seven of the 287 eligible respondents, corresponding to a response rate of 63%, completed the questionnaire. For all autosomal recessive and X-linked disorders studied, the majority of the respondents were very unwilling or unwilling to provide a carrier test to a 6-year-old asymptomatic child on parental request (range 73-91%). The results of the Wilcoxon-Mann-Whitney U test indicated that for almost all disorders, respondents from Eastern and Southern European countries are more willing to provide a carrier test to a 6-year-old asymptomatic child than respondents from Western and Northern European countries. The Spearman's rank correlation coefficients showed that when a clinical geneticist was unwilling to perform such a test, he/she mostly disagreed that parental uncertainty and anxiety was a good reason to perform a carrier test, he/she mostly disagreed that parents should have the right to decide about such a test, he/she mostly agreed that future autonomy and the confidentiality of genetic information is violated if this test is performed. Overall, the survey showed an adherence to existing recommendations and guidelines regarding carrier testing in incompetent minors. However, for every condition studied, a group of clinical geneticists was willing or very willing to provide a carrier test to a 6-year-old child on parental request.

Handling dilemmas of self-determination in ‘user-centred’ rehabilitation

Purpose. To describe discursive strategies used by different professionals and parents to handle dilemmas of self-determination versus paternalism during six ‘user-centred’ team meetings in the Swedish rehabilitation sector. The dilemmas arise when the users' responses do not fully meet the demands of the liberal ideal of self-determination.Method. Three cases are used to illustrate three discursive strategies that have been found by means of discourse analysis of transcriptions of the audio-recorded meetings. Four teams consisting of one user each participate in the study. The users have been ascribed physical and/or cognitive disabilities and their ages vary between 14 and 30.Results. The dilemmas were never made explicit. Parents and professionals performed a kind of paternalistic steering termed ‘challenging the user's response’, ‘substituting for the user’, or ‘dropping the user's response’.Conclusions. The least paternalistic steering includes making the dilemma explicit and offering the user the opportunity of sharing the responsibility for the handling of the situation. However, due to the complexity of the interactions no strategy can be found to either completely prevent the occurrence of dilemmatic situations, or definitely maintain the user's self-determination during dilemmatic situations. Paternalism may occasionally be a just way of enhancing future autonomy.

Conséquences psychologiques des naissances multiples

Since the mid 1970s, the number of multiple births has dramatically increased in our country and most European countries. This paper summarizes the psychological consequences of multiple births based on a review of the literature and on our clinical experience. During pregnancy mothers experience great physical problems linked with increased medical risks for themselves and for the children. These risks cause psychological difficulties: hospitalisation and separation from the family, fear of a premature delivery and anxiety for the children. After delivery the children are often hospitalized, which makes the attachment process difficult. The mortality of multiple children is high and mourning for one child creates particular problems for parents who simultaneously face grieving and attachment processes. After hospital discharge, the overload of work mothers experience leads to physical and nervous fatigue, which does not make easier individual relationship with the children. Mothers have a high level of psychological vulnerability and an increased risk of depression. The satisfactory development of each twin or triplet child requires individualized relationship with his/her mother and his/her father. That is how he/she will be able to build his/her identity and future autonomy. It is important to be aware of the problems experienced by the families and to improve the way material help and psychological support are provided to them.

A review of the experience of hospital autonomy in Pakistan

This paper examines the recent trends in public hospital autonomy as an integral part of health systems reforms. It reviews literature produced on the subject across a range of developing countries and explores varying viewpoints, arguments, and rationale for hospital autonomy developed over the past two decades. It then leads onto a discussion of two experiences of autonomy reforms in Pakistan: the provinces of Punjab and NWFP. Derived from the lessons learned from these initiatives, a set of guidelines is suggested as sustainable frameworks for reviewing the current measures and for designing future autonomy initiatives in Pakistan.

How Autonomous are Public Corporations in Hong Kong? The Case of the Airport Authority

This article examines the degree of autonomy of Hong Kong’s Airport Authority (AA). Traditionally, airport management in Hong Kong was the responsibility of the government’s Civil Aviation Department. The AA was established in 1995 to manage the new international airport at Chek Lap Kok which opened in 1998. It was expected to run as a commercial enterprise but, because of its strategic importance, there was concern that it should not become an independent empire detached from government control. As a hybrid type of organization, the AA has moved steadily towards full commercialization. The government has also put its privatization on the agenda. Its transformation may have some implications for the redefinition of the future autonomy boundaries of public corporations in Hong Kong.

Development of An Aspirational Campaign to Prevent Youth Substance Use: “Be under Your Own Influence”

We describe the development of a media campaign that decreased the uptake of substances by 40% among middle-school students. The campaign, “Be Under Your Own Influence,” is unique in its focus on the incongruence of drugs with achieving future aspirations and personal autonomy, themes which have received scant attention to date. Other distinctive features of the campaign include in-school distribution as well as media advocacy and other community-based efforts. The article will describe conceptual frameworks and formative research used to inform campaign development and implementation. The discussion will identify factors that may have enhanced success, as well as implications for social marketing efforts.

Principles and practice of geriatric assent

Geriatric assent involves health care professionals’ active collaboration with cognitively impaired patients that takes account of their longstanding values in any major health care decisions. The main purpose of this paper is to assist geriatric health practitioners ‘in the field’ to understand how to apply geriatric assent in a variety of clinical situations to maximize incapacitated older adults’ input into decision-making. A case example and algorithm are presented to illustrate the basic principles of implementing geriatric assent. Practice informed by the principles of geriatric assent will preserve respect for the current and future autonomy of patients across diverse cultural backgrounds.