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PubMed2004

On the German debate on human embryonic stem cell research.

Germany since 1990 has one of the strictest human embryo protection laws, yet according to the Stem Cell Act of 2002 allows, under strict conditions, the import and use of human embryonic stem cells (hESC) for high priority research goals. The author tries to show how this is taken to be coherent by the parliamentary majority (though not necessarily by the general public) in Germany. In doing so, he firstly looks into the chronicle of the debate in Germany showing its different stages since 1999, then dwells upon the relation between the law and the role of ethics in this issue, and thirdly presents the two fundamentally different positions of the German debate, that is, that the human embryo created for IVF purposes is a human being and stands from its very beginnings under the constitutional principles of respect for, and protection of, human life versus the position that before being implanted the human embryo may become a human being and therefore belongs to the human species only potentially, so that its right to life protection may be assessable over against other high priority goals, such as research aiming at possible help for patients with life-endangering diseases. In spite of the Stem Cell Act of 2002, the debate of the German general public goes on, especially due to the recent EU 6th Research Framework Program which plans to also fund hESC research.

Bioethics↗
PubMed2005

Rejecting the Baby Doe rules and defending a "negative" analysis of the Best Interests Standard.

Two incompatible policies exist for guiding medical decisions for extremely premature, sick, or terminally ill infants, the Best Interests Standard and the newer, 20-year old "Baby Doe" Rules. The background, including why there were two sets of Baby Doe Rules, and their differences with the Best Interests Standard, are illustrated. Two defenses of the Baby Doe Rules are considered and rejected. The first, held by Reagan, Koop, and others, is a "right-to-life" defense. The second, held by some leaders of the American Academy of Pediatrics, is that the Baby Doe Rules are benign and misunderstood. The Baby Doe Rules should be rejected since they can thwart compassionate and individualized decision-making, undercut duties to minimize unnecessary suffering, and single out one group for treatment adults would not want for themselves. In these ways, they are inferior to the older Best Interests Standard. A "negative" analysis of the Best Interests Standard is articulated and defended for decision-making for all incompetent individuals.

Abnormalities, Multiple↗
PubMed2003

The governance of human genetics: policy discourse and constructions of public trust.

The collection of practices now commonly understood as 'biotechnology' poses a challenge to traditional mechanisms of regulating science and technology, just as it challenges traditional practices of science. The task of regulation is to reconcile the often conflicting political demands of protecting science, economy and the public interest. Public trust is the key measure of political success or failure. The purpose of this paper is to use policy discourse analysis as a vehicle for exploring the politics of the relationship between human genetics governance and public trust. An analysis of 30 policy documents produced six identifiable discourse streams relevant to public trust. These findings will be discussed, and an analysis of their impact on effective governance presented in conclusion.

Advisory Committees↗
PubMed2004

'Wonderment and dread': representations of DNA in ethical disputes about forensic DNA databases.

The national DNA Database of England & Wales is the largest forensic DNA database in the world. Since 1995 it has quickly developed to hold the genetic profiles of over two million people. This collection of tissue samples, taken without consent from a sizeable collection of the population, has engendered a number of ethical commentaries on its legitimacy as a proportionate response to crime. This paper examines the ways in which the ethical discourses, which surround the uses of the National DNA Database, drew upon and deployed a number of distinct representations of DNA. It is argued that key ideas about DNA have become central to everyday assertions about the benefits and dangers of this forensic technology.

Biological Specimen Banks↗
PubMed2000

Laws restricting health insurers' use of genetic information: impact on genetic discrimination.

Since 1991, 28 states have enacted laws that prohibit insurers' use of genetic information in pricing, issuing, or structuring health insurance. This article evaluates whether these laws reduce the extent of genetic discrimination by health insurers. From the data collected at multiple sites, we find that there are almost no well-documented cases of health insurers either asking for or using presymptomatic genetic test results in their underwriting decisions, either (a) before or after these laws have been enacted or (b) in states with or without these laws. By using both in-person interviews with insurers and a direct market test, we found that a person with a serious genetic condition who is presymptomatic faces little or no difficulty in obtaining health insurance. Furthermore, there are few indications that the degree of difficulty varies according to whether a state regulates the use of genetic information. Nevertheless, these laws have made it less likely that insurers will use genetic information in the future. Although insurers and agents are only vaguely aware of these laws, the laws have shaped industry norms and attitudes about the legitimacy of using this information.

Genetic Counseling↗
PubMed2002

Subsidised oocyte donation in Israel (1998-2000): results, costs and lessons.

BACKGROUND: Israeli law stipulates that all women aged 45-51 who need oocyte donation are entitled to as many donations as necessary, up to the birth of one child. Only oocytes donated by women who themselves are undergoing assisted reproduction are allowed. The government subsidizes all oocyte donation cycles through the medical insurer of the recipient, whether or not the procedure is performed in a public or private institution. The aim of the present study was to investigate the success of oocyte donation cycles in Israel for the period 1998-2000 and to estimate costs and pregnancy rates. METHODS: Data were derived from the Dan District Registry of the General Health Services (Sheirutei Bri'ut Clalit), the largest medical insurer in Israel. RESULTS: 171 women underwent 254 oocyte donation cycles within these 3 years, and 45 babies were born, for a positive outcome of 17.7%. Average annual cycle cost was US$1742 and average annual cost per patient, US$2521. The total annual cost for the district accounted for only 0.05% of the budget. CONCLUSIONS: These findings suggest that IVF with donated oocytes is relatively efficient and that government funding of oocyte donation cycles ensures a reasonable cost.

Birth Rate↗
PubMed2005

The 2004 Italian legislation regulating assisted reproduction technology: a multicentre survey on the results of IVF cycles.

BACKGROUND: The new Italian law, passed in 2004, regulating assisted reproduction technology imposes that no more than three oocytes can be fertilized at one time and that all embryos obtained must be transferred simultaneously. Oocyte cryopreservation is allowed while embryo cryostorage is banned. The aim of this study was to evaluate the clinical impact of these limitations. METHODS: Seven Italian infertility centres were invited to collect data on IVF cycles performed over the first 4 months of application of the new legislation. As a control, all centres provided data on cycles performed in the same solar period, 1 year before. RESULTS: Data from 1861 cycles were obtained, 961 in the pre-law period and 900 in the post-law period. Pregnancy rate per oocyte retrieval and rate of multiple pregnancies in the pre- and post-law periods were 27.0 and 24.2% (P=0.18) and 25.8 and 20.9% (P=0.11) respectively. However, the prohibition to freeze embryos does appear to have markedly reduced the cumulative rate of success. CONCLUSIONS: The rate of success of IVF-ICSI cycles using fresh embryos is not significantly influenced by the new legislation while the prohibition to freeze embryos seems to result in a more relevant impact.

Adult↗
PubMed1999

The duty of care of the occupational physician in assessing job applicants.

Where an occupational physician carries out a medical assessment of a job applicant, he or she owes a duty to the employer but not to the applicant, unless actual physical harm is caused. If the applicant is unsuccessful as a result of an assessment which is alleged to be negligent, he or she cannot sue the physician. This is essentially because (i) the relationship between the physician and the applicant is insufficiently close, and (ii) the physician might be faced with a conflict of interest since differing duties might be owed to the employer and to the applicant.

Attitude of Health Personnel↗