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PubMed2004

Property rights in genetic information.

The primary theme of this paper is the normative case against ownership of one's genetic information along with the source of that information (usually human tissues samples). The argument presented here against such "upstream" property rights is based primarily on utilitarian grounds. This issue has new salience thanks to the Human Genome Project and "bio-prospecting" initiatives based on the aggregation of genetic information, such as the one being managed by deCODE Genetics in Iceland. The rationale for ownership is twofold: ownership will protect the basic human rights of privacy and autonomy and it will enable the data subjects to share in the tangible benefits of the genetic research. Proponents of this viewpoint often cite the principle of genetic exceptionalism, which asserts that genetic information needs a higher level of protection than other kinds of personal information such as financial data. We argue, however, that the recognition of such ownership rights would lead to inefficiency along with the disutility of genetic discoveries. Biomedical research will be hampered if property rights in genes and genetic material are too extensive. We contend that other mechanisms such as informed consent and strict confidentiality rules can accomplish the same result as a property right without the liabilities of an exclusive entitlement.

Access to Information↗
PubMed1990

Limiting treatment for extremely premature, low-birth-weight infants (500 to 750 g).

Despite impressive recent advances in neonatology, outcomes for extremely premature, very-low-birth-weight infants (500 to 750 g) remain uneven. In a situation of inherent uncertainty, treating patients vigorously could do violence to the moral principles of nonmaleficence and (distributive) justice. Equally, failing to treat patients vigorously because of concerns about nonmaleficence and (distributive) justice could violate the principle of patient-centered beneficence. Compounding this dilemma is the legacy of the "Baby Doe Regulations." International perspectives on this particular quandary are provided. We assert that at Stanford (Calif) University the "individualized prognostic strategy" rather than the "wait until certainty" approach prevails. Four concluding questions are posed: Why is prevention not encouraged more than after-the-fact heroic intervention? Is it possible to develop a more rational view of stopping aggressive therapy once having started? Can we ignore the finitude of our medical resources? Is there a need to redefine the nature of autonomy?

Beneficence↗
PubMed2006

The role of autonomy-connectedness in depression and anxiety.

The relationship between autonomy-connectedness, and depression and anxiety was investigated in 94 primary mental health care patients and 95 psychology students. All participants completed the Autonomy-Connectedness Scale-30 (ACS-30), the Beck Depression Inventory (BDI), and the Symptom Checklist-90 (SCL-90). Results indicated that the primary mental health care group compared with the control group scored lower in Self-Awareness and Capacity for Managing New Situations, and higher in Sensitivity to Others. Women compared with men had higher levels of self-reported Sensitivity to Others. Regression analyses showed that both (low) Self-Awareness and (high) Sensitivity to Others predicted depression, as well as anxiety; also, (low) educational level had predictive value. These results indicate that low autonomy-connectedness might be a risk factor for depression and anxiety.

Adult↗
PubMed2005

Patient autonomy: a view from the kitchen.

In contemporary liberal ethics patient autonomy is often interpreted as the right to self-determination: when it comes to treatment decisions, the patient is given the right to give or withhold informed consent. This paper joins in the philosophical and ethical criticism of the liberal interpretation as it does not regard patient autonomy as a right, rule or principle, but rather as a practice. Patient autonomy, or so I will argue, is realised in the concrete activities of day-to-day health care, in the material and technological context of care, in arrangements of health care institutions, in the physical training of people with disabilities, as well as in the concrete activities of care-giving. This move from conversations in the consultation room to other sites and situations in the practice of care takes seriously the empirical reality of medical care and intends to show that patient autonomy is practically realised in a much richer and more creative way than most ethical theory seems to assume.

Cooking↗
PubMed2006

Autonomy, wellbeing, and the case of the refusing patient.

A moral problem arises when a patient refuses a treatment that would save her life. Should the patient be treated against her will? According to an influential approach to questions of biomedical ethics, certain considerations pertaining to individual autonomy provide a solution to this problem. According to this approach, we should respect the patient's autonomy and, since she has made an autonomous decision against accepting the treatment, she should not be treated. This article argues against the view that our answer to the question of whether or not the refusing patient ought to be treated should be based on these kinds of considerations pertaining to individual autonomy and maintains that finding a plausible answer to this question presupposes that we resolve questions concerning subjectivity and objectivity of individual wellbeing.

Ethics, Clinical↗
PubMed2005

Prodromal interventions for schizophrenia vulnerability: the risks of being "at risk".

Given the morbidity and difficulty of treating psychotic disorders, including schizophrenia, there has been a move toward identifying and treating adolescents and young adults who appear to be clinically at risk or "prodromal" to psychosis. The field now has greater specificity in identification, with rates of 40-50% conversion to frank psychosis within 1-2 years. There is further evidence that medications and other treatments may have some efficacy for "prodromal" patients, though with variable side effects. However, controversy remains about some of the inherent risks in prodromal research, such as medication exposure and stigma among false-positives. In this paper, we add to this discussion through an analysis of ethics in prodromal research from the more established field of predictive genetic testing. Issues are raised about the effects of information on patients, families, and institutions, as well as future insurability, the limits of confidentiality (as it relies on discretion of patients and families), the autonomy of minors with psychiatric symptoms, and even the risks for the true-positive patient.

Confidentiality↗
PubMed2002

Attachment and autonomy as predictors of the development of social skills and delinquency during midadolescence.

This study examined adolescent attachment organization as a predictor of the development of social skills and delinquent behavior during midadolescence. Delinquent activity and skill levels were assessed for 117 moderately at-risk adolescents at ages 16 and 18, and maternal and adolescent attachment organization and autonomy in interactions were assessed at age 16. Adolescent attachment security predicted relative increases in social skills from age 16 to 18, whereas an insecure-preoccupied attachment organization predicted increasing delinquency during this period. In addition, preoccupied teens interacting with highly autonomous mothers showed greater relative decreases in skill levels and increases in delinquent activity over time, suggesting a heightened risk for deviance among preoccupied teens who may be threatened by growing autonomy in adolescent-parent interactions.

Adolescent↗
PubMed2002

[Differing aspects of human dignity in intensive medicine].

Human dignity often is used as an ethical category in medical judgement of current medical and intensive care decisions. The short history of the intensive care medicine, however, demonstrates a certain drift in the use of the term "human dignity". Parallel to the more pronounced patient autonomy, articulated in patient testaments, therapeutic decisions of current intensive care medicine individualize therapeutic approaches, instead of preferentially maximizing life span.

Critical Care↗
PubMed1987

Ethical considerations concerning computers in medicine in the 1980s.

The advent of information technology and computers in medicine two decades ago posed a new set of ethical problems. In recent years, these problems have been compounded by the increasing use of computers for supporting clinical decisions as well as administration and record keeping. This presentation considers some of the problems which are raised by the use of computers to support clinical decisions, under the various headings of beneficence, non-maleficence, autonomy and justice. For each aspect the problems raised are described and the implications discussed.

Beneficence↗
PubMed2006

On the politics and practice of Muslim fertility: comparative evidence from West Africa.

Recent popular works have represented Muslim fertility as dangerously high, both a cause and consequence of religious fundamentalism. This article uses comparative, statistical methods to show that this representation is empirically wrong, at least in West Africa. Although religion strongly inflects reproductive practice, its effects are not constant across different communities. In West African countries with Muslim majorities, Muslim fertility is lower than that of their non-Muslim conationals; in countries where Muslims are in the minority, their apparently higher reproductive rates converge to those of the majority when levels of education and urban residence are taken into account. A similar pattern holds for infant mortality. By contrast, in all seven countries, Muslim women are more likely to report that their most recent child was wanted. The article concludes with a discussion of the relationship between autonomy and fertility desires.

Adult↗