Indigenous peoples and the morality of the Human Genome Diversity Project. (1/120)

In addition to the aim of mapping and sequencing one human's genome, the Human Genome Project also intends to characterise the genetic diversity of the world's peoples. The Human Genome Diversity Project raises political, economic and ethical issues. These intersect clearly when the genomes under study are those of indigenous peoples who are already subject to serious economic, legal and/or social disadvantage and discrimination. The fact that some individuals associated with the project have made dismissive comments about indigenous peoples has confused rather than illuminated the deeper issues involved, as well as causing much antagonism among indigenous peoples. There are more serious ethical issues raised by the project for all geneticists, including those who are sympathetic to the problems of indigenous peoples. With particular attention to the history and attitudes of Australian indigenous peoples, we argue that the Human Genome Diversity Project can only proceed if those who further its objectives simultaneously: respect the cultural beliefs of indigenous peoples; publicly support the efforts of indigenous peoples to achieve respect and equality; express respect by a rigorous understanding of the meaning of equitable negotiation of consent, and ensure that both immediate and long term economic benefits from the research flow back to the groups taking part.  (+info)

Should Zelen pre-randomised consent designs be used in some neonatal trials? (2/120)

My aim is to suggest that there is a case for using a randomised consent design in some neonatal trials. As an example I use the trials of extracorporeal membrane oxygenation (ECMO) in neonates suffering pulmonary hypertension. In some trials the process of obtaining consent has the potential to harm the subject, for example, by disappointing those who end in the control group and by creating additional anxiety at times of acute illness. An example of such were the trials of extracorporeal membrane oxygenation (ECMO) in neonates suffering pulmonary hypertension. Pre-randomised consent could avoid or lessen these harms. However, a number of ethical objections are made to these research designs. They involve denial of information, using people, denial of choice, and "overselling" of allocated treatment. Furthermore, they are the wrong response; better communication might be the answer, for example. I argue that these objections are not completely persuasive. However, they are enough to suggest caution in the use of such designs.  (+info)

Should childhood immunisation be compulsory? (3/120)

Immunisation is offered to all age groups in the UK, but is mainly given to infants and school-age children. Such immunisation is not compulsory, in contrast to other countries, such as the United States. Levels of immunisation are generally very high in the UK, but the rates of immunisation vary with the public perception of the risk of side effects. This article discusses whether compulsory vaccination is acceptable by considering individual cases where parents have failed to give consent or have explicitly refused consent for their children to be immunised. In particular, the rights of: a parent to rear his/her child according to his/her own standards; the child to receive health care, and the community to be protected from vaccine-preventable infectious disease are considered. The conclusion of the article is that compulsory vaccination cannot, with very few exceptions, be justified in the UK, in view of the high levels of population immunity which currently exist.  (+info)

Consent to treatment and the mentally incapacitated adult. (4/120)

Doctors are sometimes faced with adult patients who lack the mental capacity to consent to treatment. In a questionnaire, 120 doctors in a district general hospital were asked what action they would take if such a patient had a clear need for elective treatment. Of the 89 who replied, 57 said they would seek consent from relatives or others; 11 of these, nevertheless, stated that treatment could proceed without such consent. These results, and inquiries about other options, pointed to widespread misunderstanding of the law. In English law, no one can give legally valid consent on behalf of another adult. When an individual is unable to give consent, common law allows a doctor to protect a patient's best interests by treating him or her in accordance with a responsible body of medical opinion.  (+info)

Resurrecting autonomy during resuscitation--the concept of professional substituted judgment. (5/120)

The urgency of the resuscitation and the impaired ability of the patient to make a reasonable autonomous decision both conspire against adequate consideration of the principles of medical ethics. Informed consent is usually not possible for these reasons and this leads many to consider that consent is not required for resuscitation, because resuscitation brings benefit and prevents harm and because the patient is not in a position to give or withhold consent. However, consent for resuscitation is required and the common models employed for this purpose are presumed consent or consent from a patient proxy. However, if we are to honour the principles of respect for patient autonomy, as well as beneficence and non-maleficence, when starting and continuing resuscitation we must try and achieve the best balance between benefit and harm from the patient's perspective. The concept of professional substituted judgment involves the resuscitators gathering as much information about the patient as they possibly can, including any previously expressed attitudes towards such a situation, and combining this with their acquired professional knowledge of the likely benefits and harms of the resuscitation endeavour and then exercising their moral imagination, imagining themselves as the patient, and asking "would I want this treatment?" By employing professional substituted judgment resuscitators should recognise when the balance of benefit and harm becomes unfavourable from the patient's perspective and at this point they have a moral obligation to withdraw resuscitation as they can no longer presume the patient's consent. In this way the principles of beneficence, non-maleficence and respect for patient autonomy are more favourably balanced than under other resuscitation decision making processes.  (+info)

Parental consent to publicity. (6/120)

The problems presented by the use of named child patients and their medical histories in television, radio and newspapers is discussed. It is suggested that it is not acceptable to regard this as comparable to their participation in non-therapeutic research, and that no one, not even the parent has the authority to give consent to such use.  (+info)

Differences in parental- and self-report of asthma, rhinitis and eczema among Italian adolescents. SIDRIA collaborative group. Studi Italiani sui Disordini Respiratori dell' Infanzia e l'Ambiente. (7/120)

Epidemiological and clinical information on respiratory and allergic disorders in adolescents has been collected from the adolescents themselves or from their parents, but little is known about the differences between these two sources of information. This study compared the responses to 10 identically worded questions from the International Study of Asthma and Allergies in Childhood (ISAAC) questionnaire on asthma, rhinitis and eczema between written self- and parent-completed questionnaires in a large sample of 21,068 adolescent Italians aged 13-14 yrs. The effects of sex, latitude of residence, urbanization, socioeconomic status, previous diagnosis of asthma, family history of allergic diseases and adolescent's smoking habits on the prevalence estimates obtained with the two questionnaires were analysed using multiple logistic regression. Prevalence of self-reported symptoms was significantly higher in self-reported for all questions except for lifetime eczema, which was higher in parental report. Agreement between the two sources of information was poor, although it was slightly better for questions relative to clinical diagnosis of asthma, hay fever or eczema than for related symptoms, and for respiratory with respect to cutaneous disorders. When compared with self-reported, parent-reported was consistently higher in males and was more affected by socioeconomic level and by a diagnosis of asthma or family history of allergic diseases, whereas self-reported was more sensitive to the effect of the adolescent's smoking habits. It is concluded that, in adolescents, parent- and self-reported respiratory and allergic symptoms differ significantly and are differently affected by several constitutional and environmental factors. Obtaining direct information from adolescents may be essential for a correct evaluation of respiratory symptoms.  (+info)

Parental consent to cosmetic facial surgery in Down's syndrome. (8/120)

It is suggested that the practice of attempting to normalise children with Down's syndrome by subjecting them to major facial plastic surgery has no therapeutic benefit, and should be seen as multilating surgery comparable to female circumcision.  (+info)