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Ignorance, information and autonomy.

People have a powerful interest in genetic privacy and its associated claim to ignorance, and some equally powerful desires to be shielded from disturbing information are often voiced. We argue, however, that there is no such thing as a right to remain in ignorance, where a fight is understood as an entitlement that trumps competing claims. This does not of course mean that information must always be forced upon unwilling recipients, only that there is no prima facie entitlement to be protected from true or honest information about oneself. Any claims to be shielded from information about the self must compete on equal terms with claims based in the rights and interests of others. In balancing the weight and importance of rival considerations about giving or withholding information, if rights claims have any place, rights are more likely to be defensible on the side of honest communication of information rather than in defence of ignorance. The right to free speech and the right to decline to accept responsibility to take decisions for others imposed by those others seem to us more plausible candidates for fully fledged rights in this field than any purported right to ignorance. Finally, and most importantly, if the right to autonomy is invoked, a proper understanding of the distinction between claims to liberty and claims to autonomy show that the principle of autonomy, as it is understood in contemporary social ethics and English law, supports the giving rather than the withholding of information in most circumstances.

Confidentiality↗

Observed and perceived parental overprotection in relation to psychosocial adjustment in preadolescents with a physical disability: the mediational role of behavioral autonomy.

The purpose of this study was to tes a mediational model of associations between parental overprotectiveness (OP), behavioral autonomy. and psychosocial adjustment in 68 families with 8- and 9-year-old preadolescents with spipa bifida and a demographically matched sample of 68 families with able-bodied children. Measures included questionnaire and observational assessments of parental OP; parent and child reports of behavioral autonomy; and parent, child, and teacher reports of preadolescent adjustment. On the basis of both questionnaire and observational measures of OP, mothers and fathers of children with spina bifida were significantly more overprotective than their counterparts in the able-bodied sample, although this group difference was partially mediated by children's cognitive ability. Across samples, mothers were more likely to be overprotective than fathers. Both questionnaire and observational measures of parental OP were associated with lower levels of preadolescent decision-making autonomy as well as with parents being less willing to grant autonomy to their offspring in the future. For the questionnaire measure of OP, and only for the spina bifida sample. the mediational model was supported such that parental OP was associated with less behavioral autonomy, which was, in turn, associated with more externalizing problems. Findings are discussed in relation to the literature on parenting, autonomy development, and pediatric psychology.

Adaptation, Psychological↗

Autonomy development in adolescents with insulin dependent diabetes mellitus.

This descriptive study investigated autonomy development among young adolescents with insulin-dependent diabetes mellitus (IDDM); assessed relationships among behavioral, cognitive, and emotional autonomy; and determined the relationships between these types of autonomy and metabolic control. Developmental and family theory provided the framework for this study. This investigation suggested that the pattern of autonomy for adolescents with IDDM is congruent with that of adolescents without chronic illness. The three autonomy types are conceptually distinct and one aspect of emotional autonomy was related to poorer metabolic control. Daughters and adolescents in one-parent families scored higher on this component.

Adolescent↗

ICU psychosis and patient autonomy: some thoughts from the inside.

I shall draw on my experience of being an ICU patient to make some practical, ethical, and philosophical points about the care of the critically ill. The recurring theme in this paper is ICU psychosis. I suggest that discharged patients ought to be educated about it; I discuss the obstacles in the way of accurately measuring it; I argue that we must rethink autonomy in light of it; and I suggest that the self disintegrates in the face of it.

Critical Care↗

Evolving issues in surrogate motherhood.

Surrogate mothering is an arrangement whereby a woman who gives birth to an infant intends--through a contractual agreement--to give that baby to another couple. The recent Baby M case in the United States has raised numerous legal concerns causing many legislative bodies to consider possible statutes to regulate or prohibit surrogacy. The competing interests among and between the individuals involved in this relationship (i.e., the surrogate mother, the couple, the baby, and society) suggest various ethical issues related to benefits, risks, and autonomy. Legal and ethical concerns surrounding the technologically possible procedure of surrogate motherhood are discussed.

Adoption↗

Informed consent: the information component.

Patients are asked to give informed consent for both treatment and research protocols. Yet, is their consent really informed? This article focuses on the information component of informed consent. The author discusses informed consent as it relates to the ethical principle of respect for autonomy, presents nurses' perceptions of informed consent, and makes several recommendations that nurses can use to ensure that consent is informed.

Comprehension↗

Informed consent: client participation in childbirth decisions.

In recent years, there has been a tremendous rise in public consciousness concerning patients' rights. Previously, patients relied upon the expertise of health-care providers, but now it is more common for patients to seek active involvement in the decision-making process affecting their care. The patient's right to self-determination is central to the decision-making process between the client and the provider. A patient's right to autonomy, therefore, imposes an obligation upon the health-care provider to obtain informed consent from the obstetric client.

Delivery, Obstetric↗

Respecting the autonomy of cancer patients when talking with their families: qualitative analysis of semistructured interviews with patients.

OBJECTIVE: To discover cancer patients' views about disclosure of information to their family, their family's influence over the information given them, and their preferences for doctors' behaviour if they and their family disagree, as a complement to applied ethical theory. DESIGN: Semistructured interviews followed by qualitative content analysis. SETTING: Mainly urban British general practice. SUBJECTS: 30 patients in whom cancer, excluding basal and squamous cell skin carcinomas, was diagnosed 1-7 years earlier. RESULTS: All subjects wished doctors to respect their views rather than those of their family, should they differ. With their consent, subjects favoured close family receiving information about their illness, all but one mentioning advantage to their family. Without such consent, six unconditionally favoured disclosure of information to their family while seven unconditionally opposed disclosure. Seventeen participants restricted their approval for such disclosure to specific circumstances. Only two participants approved of their family influencing the information that they received about their illness; all but seven wished to receive full information, the exceptions relating to information about bad prognosis. CONCLUSIONS: Subjects favoured openness with their family but most rejected unconditional disclosure of information without their consent and their family influencing what information they would be given. They valued respect for their autonomy more highly than beneficence and considered that their own needs took priority over those of their family.

Attitude to Health↗

The medical student and the suicidal patient.

Today's medical students are being confronted with ethical situations of far greater complexity than were their predecessors and yet the medical education system does little to prepare students for the ethical dilemmas which they inevitably face when entering the hospital environment. The following article addresses the issues surrounding a case where a patient has told a student in confidence of his plans to commit suicide. What should the student do? The only way for the student to prevent death is by breaking confidentiality because the student has insufficient clinical experience to provide adequate guidance. However, this requires ignoring the patient's right to autonomy, a right enshrined in both case law and medical ethics. Clearly the student's ethical, moral and legal position must be carefully evaluated.

Confidentiality↗

Cancer patients: their desire for information and participation in treatment decisions.

The relationship between cancer patients' desire for information and their preference for participation in decision making has been examined. Approximately 77% of the 52 patients reported that they had participated in decision making to the extent that they wished, while most of the remaining 23% would have preferred an opportunity to have greater input. Although many of the patients actively sought information, a majority preferred the physician to assume the role of the primary decision maker. Ethically, the disclosure of information has been assumed to be necessary for autonomous decision making. Nevertheless, the results of this study indicate that patients may actively seek information to satisfy an as yet unidentified aspect of psychological autonomy that does not necessarily include participation in decision making.

Canada↗

[The effects of a sex education program on knowledge related to sexually transmitted diseases and sexual autonomy among university students].

PURPOSE: The purpose of this study was to evaluate the effects of a sex education program, which was based on the Health Belief Model, on knowledge related to sexually transmitted diseases and sexual autonomy among university students. METHOD: A non-equivalent control group, pretest-posttest design was used. The four session program was delivered to 18 students during 4 weeks; the control group consisted of 23 students. The theme of the first session was "sex, gender, and sexuality: all our concern", "dangerous sex" for the second session, "safe sex" for the third session, and "right sex for you and me" for the fourth session. RESULT: At follow-up, the knowledge related to sexually transmitted diseases and sexual autonomy were significantly greater in the intervention group than in the control group. CONCLUSION: A sex education program with several sessions within the theoretical frame of HBM was effective to improve knowledge related to sexually transmitted diseases and sexual autonomy. The results suggest the potential of a systematic sexual education program to teach healthy sex and to extend the program for other various populations.

Adult↗

Our bodies, our families. The family's role in organ donation.

The 1968 Uniform Anatomical Gift Act--in keeping with a legal (and medical) concern for individual autonomy--bypassed the family in establishing the legal requirements for cadaveric organ donation, but current practice wisely recognizes a role for families in the decision making.

Advance Directives↗

Children and adolescents' capacity to provide informed consent for participation in research.

Researchers who work with children and adolescents are confronted with a special set of ethical issues regarding informed consent. Federal guidelines generally stipulate that minors cannot provide informed consent for participation in research. Instead parental or guardian permission must be obtained for a minor to participate in research. However the literature in developmental psychology has shown that adolescents are able to make meaningful decisions and advocates for youth have argued that researchers must respect the autonomy rights of children and adolescents. The present review examines the developmental literature on children and adolescents' capacities to make informed, voluntary, and rational decisions to participate in research. The purposes and benefits of assent are identified. Recommendations are offered on how to enhance and respect minors' developing autonomy while protecting them from risks of research.

Adolescent↗

The right not to know: an autonomy based approach.

The emerging international biomedical law tends to recognise the right not to know one's genetic status. However, the basis and conditions for the exercise of this right remain unclear in domestic laws. In addition to this, such a right has been criticised at the theoretical level as being in contradiction with patient's autonomy, with doctors' duty to inform patients, and with solidarity with family members. This happens especially when non-disclosure poses a risk of serious harm to the patient's relatives who, without that vital information, could be deprived of preventive or therapeutic measures. This paper argues, firstly, that individuals may have a legitimate interest in not knowing their genetic make up to avoid serious psychological consequences; secondly, that this interest, far from being contrary to autonomy, may constitute an enhancement of autonomy; thirdly, that the right not to know cannot be presumed, but must be "activated" by the individual's explicit choice, and fourthly, that this is not an absolute right, in the sense that it may be restricted when disclosure to the patient is necessary in order to avoid a risk of serious harm to third persons.

Choice Behavior↗

Bioethics for clinicians: 12. Ethical dilemmas that arise in the care of pregnant women: rethinking "maternal-fetal conflicts".

When a pregnant woman makes a decision or acts in a manner that may be detrimental to the health and well-being of her fetus, her physician may be faced with an ethical dilemma. Is the physician's primary duty to respect the woman's autonomy, or to promote behaviour that may be in the best interest of the fetus? The controversial concept of "fetal rights" or the "fetus as a patient" contributes to the notion that the pregnant woman and her fetus are potential adversaries. However, Canadian law has upheld women's right to life, liberty and security of the person and has not recognized fetal rights. If a woman is competent and refuses medical advice, her decision must be respected even if the physician believes that her fetus will suffer as a result. Coercion of the woman is not permissible no matter what appears to be in the best interest of the fetus.

Adult↗

Ethical dilemmas of do-not-resuscitate orders in surgery.

One of the most troublesome ethical dilemmas that perioperative nurses face is do-not-resuscitate (DNR) orders for surgical patients. The principles of futility, informed consent, autonomy, and beneficence underpin ethical decision making about DNR orders in surgical patients.

Adult↗

Diabetic hyperosmolarity: a consequence of loss of autonomy.

Diabetic hyperosmolarity is a serious acute metabolic disorder mainly occurring in the frail elderly subject presenting age-related favoring factors (reduced sensation of thirst, altered endocrine regulation), disease-related favoring factors (cognitive impairment, poor nutritional status and/or loss of autonomy), and a triggering factor, generally infection. Diabetic hyperosmolarity can occur in a previously non-diabetic patient. Intense dehydration dominants the clinical picture. The prognosis depends largely on the underlying chronic disease.

Diabetes Mellitus↗