Participation in breast cancer susceptibility testing protocols: influence of recruitment source, altruism, and family involvement on women's decisions.
OBJECTIVES: We offered education, counseling, and family-based BRCA1/2 testing to women at increased risk of breast cancer and assessed (a) their reasons for participating and (b) whether source of recruitment, desire to help research (altruism), and the need to communicate with their affected relative about testing distinguish those who did and those who did not complete each phase of our protocol. MATERIALS AND METHODS: We sent invitations to 403 women who had completed a questionnaire on BRCA1/2 testing, 178 of whom were considered high risk because they had more than one relative on the same side of the family with early-onset breast cancer. RESULTS: Among the 132 high-risk respondents from the mid-Atlantic states (where testing was offered), 36% (n = 47) were interested in counseling. Those who actually attended counseling were more likely to have some college education, a higher perceived risk of breast cancer, and a greater fear of stigma and were less likely to have a daughter than those who did not attend. The reasons for attending that were rated "very important" were to learn about the test (80%), to have the test (43%), and to help research (38%). High-risk women were eligible for testing only if their affected relative was willing to be tested and tested positive. After the session, 83% intended to ask their affected relative to be tested, but only half of the affected relatives actually came for pretest counseling. The proportion of participants who ultimately involved an affected relative was 2.5 times higher among women from a clinical population (25%) than among those from a registry population (10%); in this latter population, an altruistic desire to help research was a greater motivator for participation than interest in being tested. CONCLUSIONS: Source of recruitment influences both motivations to attend education and counseling and actual testing behavior. These results have implications for interpretation of findings from studies in research settings as well as for informed consent and decision-making in the context of family-based testing. (+info)
Cost-effectiveness analysis of humanitarian relief interventions: visceral leishmaniasis treatment in the Sudan.
Spending by aid agencies on emergencies has quadrupled over the last decade, to over US$6 billion. To date, cost-effectiveness has seldom been considered in the prioritization and evaluation of emergency interventions. The sheer volume of resources spent on humanitarian aid and the chronicity of many humanitarian interventions call for more attention to be paid to the issue of 'value for money'. In this paper we present data from a major humanitarian crisis, an epidemic of visceral leishmaniasis (VL) in war-torn Sudan. The special circumstances provided us, in retrospect, with unusually accurate data on excess mortality, costs of the intervention and its effects, thus allowing us to express cost-effectiveness as the cost per Disability Adjusted Life Year (DALY) averted. The cost-effectiveness ratio, of US$18.40 per DALY (uncertainty range between US$13.53 and US$27.63), places the treatment of VL in Sudan among health interventions considered 'very good value for money' (interventions of less than US$25 per DALY). We discuss the usefulness of this analysis to the internal management of the VL programme, the procurement of funds for the programme, and more generally, to priority setting in humanitarian relief interventions. We feel that in evaluations of emergency interventions attempts could be made more often to perform cost-effectiveness analyses, including the use of DALYs, provided that the outcomes of these analyses are seen in the broad context of the emergency situation and its consequences on the affected population. This paper provides a first contribution to what is hoped to become an international database of cost-effectiveness studies of health interventions during relief operations, which use a comparable measure of health outcome such as the DALY. (+info)
Challenge of Goodness II: new humanitarian technology, developed in croatia and bosnia and Herzegovina in 1991-1995, and applied and evaluated in Kosovo 1999.
This paper presents improvements of the humanitarian proposals of the Challenge of Goodness project published earlier (1). In 1999 Kosovo crisis, these proposals were checked in practice. The priority was again on the practical intervention - helping people directly - to prevent, stop, and ease suffering. Kosovo experience also prompted us to modify the concept of the Challenge of Goodness. It should include research and education (1. redefinition of health, 2. confronting genocide, 3. university studies and education, and 4. collecting experience); evaluation (1. Red Cross forum, 2. organization and technology assessment, 3. Open Hand - Experience of Good People); activities in different stages of war or conflict in: 1. prevention (right to a home, Hate Watch, early warning), 2. duration (refugee camps, prisoners-of-war camps, global hospital, minorities), 3. end of conflict (planned, organized, and evaluated protection), 4. post conflict (remaini ng and abandoned populations, prisoners of war and missing persons, civilian participation, return, and renewal). Effectiveness of humanitarian intervention may be performed by politicians, soldiers, humanitarian workers, and volunteers, but the responsibility lies on science. Science must objectively collect data, develop hypotheses, check them in practice, allow education, and be the force of good, upon which everybody can rely. Never since the World War II has anybody in Europe suffered in war and conflict so much as peoples in Croatia, Bosnia and Herzegovina, and Kosovo. We should search for the meaning of their suffering, and develop new knowledge and technology of peace. (+info)
Lessons on humanitarian assistance.
Conflict almost completely destroyed Rwanda's infrastructure in 1994. Natural disasters, as well as disasters caused by humans, have severely challenged humanitarian aid available within the country. In this study, we have analysed the experiences of nongovernmental organizations since the summer of 1994 to evaluate how these difficulties may be overcome. One of the problems identified has been restrictions on the ability to introduce effective health planning due to the poor quality of available local information. The implementation of effective plans that show due consideration to the environment and society is clearly necessary. Effective monitoring and detailed observation are identified as being essential to the continuity of existing humanitarian assistance. (+info)
Ancient Chinese medical ethics and the four principles of biomedical ethics.
The four principles approach to biomedical ethics (4PBE) has, since the 1970s, been increasingly developed as a universal bioethics method. Despite its wide acceptance and popularity, the 4PBE has received many challenges to its cross-cultural plausibility. This paper first specifies the principles and characteristics of ancient Chinese medical ethics (ACME), then makes a comparison between ACME and the 4PBE with a view to testing out the 4PBE's cross-cultural plausibility when applied to one particular but very extensive and prominent cultural context. The result shows that the concepts of respect for autonomy, non-maleficence, beneficence and justice are clearly identifiable in ACME. Yet, being influenced by certain socio-cultural factors, those applying the 4PBE in Chinese society may tend to adopt a "beneficence-oriented", rather than an "autonomy-oriented" approach, which, in general, is dissimilar to the practice of contemporary Western bioethics, where "autonomy often triumphs". (+info)
Photographic memory, money, and liposuction: survey of medical students' wish lists.
OBJECTIVES: To examine whether medical students made fewer altruistic wishes and more money oriented wishes in later years of the medical course than students in earlier years. DESIGN: Anonymous questionnaire survey. SETTING: Auckland University School of Medicine. PARTICIPANTS: 520 medical students from 6 years of the course responded to the questionnaire item "If you had three wishes what would you wish for?" MAIN OUTCOME MEASURES: Proportion of wishes in various categories. RESULTS: The three most popular categories of wishes were happiness (34% of students), money (32%), and altruistic wishes (31%). Rates of altruistic wishes (odds ratio=1.05, 95% confidence interval 0.94 to 1.18; P=0.36) and wishes for money (odds ratio=0.96, 0.86 to 1.08; P=0.52) did not vary over the years of the course. Female medical students were more likely than males to make altruistic wishes (36% v 26%; chi(2)=5.68, P=0. 02), intimacy wishes (25% v 18%; chi(2)=3.74, P=0.05), and happiness wishes (42% v 26%; chi(2)=18.82, P=0.0001). Men were more likely than women to make sexual wishes (5% v 0.8%; chi(2)=7.34, P=0.01). CONCLUSIONS: We found no evidence that students were less altruistic and more money oriented in the later years of the medical course. (+info)
Altruism, blood donation and public policy: a reply to Keown.
This is a continuation of and a development of a debate between John Keown and me. The issue discussed is whether, in Britain, an unpaid system of blood donation promotes and is justified by its promotion of altruism. Doubt is cast on the notions that public policies can, and, if they can, that they should, be aimed at the promotion and expression of altruism rather than of self-interest, especially that of a mercenary sort. Reflections upon President Kennedy's proposition, introduced into the debate by Keown, that we should ask not what our country can do for us but what we can do for our country is pivotal to this casting of doubt. A case is made for suggesting that advocacy along the lines which Keown presents of an exclusive reliance on a voluntary, unpaid system of blood donation encourages inappropriate attitudes towards the provision of health care. Perhaps, it is suggested, and the suggestion represents, on my part, a change of mind as a consequence of the debate, a dual system of blood provision might be preferable. (+info)
Cooperation through image scoring in humans.
The "tragedy of the commons," that is, the selfish exploitation of resources in the public domain, is a reason for many of our everyday social conflicts. However, humans are often more helpful to others than evolutionary theory would predict, unless indirect reciprocity takes place and is based on image scoring (which reflects the way an individual is viewed by a group), as recently shown by game theorists. We tested this idea under conditions that control for confounding factors. Donations were more frequent to receivers who had been generous to others in earlier interactions. This shows that image scoring promotes cooperative behavior in situations where direct reciprocity is unlikely. (+info)