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PubMed1998

Introduction.

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Adult↗
PubMed1998

Religion and the body in medical research.

Religious discussion of human organs and tissues has concentrated largely on donation for therapeutic purposes. The retrieval and use of human tissue samples in diagnostic, research, and education contexts have, by contrast, received very little direct theological attention. Initially undertaken at the behest of the National Bioethics Advisory Commission, this essay seeks to explore the theological and religious questions embedded in nontherapeutic use of human tissue. It finds that the "donation paradigm" typically invoked in religious discourse to justify uses of the body for therapeutic reasons is inadequate in the context of nontherapeutic research, while the "resource paradigm" implicit in scientific discourse presumes a reductionist account of the body that runs contrary to important religious values about embodiment. The essay proposes a "contribution paradigm" that provides a religious perspective within which research on human tissue can be both justified and limited.

Advisory Committees↗
PubMed2001

Is there a unique moral status of human DNA that prevents patenting?

The gene patenting debate, which proved to be a focal point for divergent moral concerns about recent developments in genome research and biotechnology, has revealed that the moral status of DNA is not clear. One of the arguments used to stop undesirable developments was that DNA possesses a unique status, which renders it unfit for patenting. This paper investigates the allegedly unique (moral) status of genetic material and the information it holds from different perspectives. Several properties of DNA prove to be unique. We examine the relevance of these for patentability of genes and conclude that only the unique symbolic meaning of DNA is a relevant factor, which should be taken into account but weighed against other interests involved.

DNA↗
PubMed2005

Ethical and legal aspects of applied genomic technologies: practical solutions.

Many ethical and legal issues surround genomic technologies, some of which are present for other kinds of medical data, but some of which are specific to genomic data. Specifically the global nature of genomic data and the life-long implications of genetic defects on the health of the individual subject produce challenges in the ethical and legal handling of this data. In general, data derived from transcriptome analysis, which studies gene expression, as well as proteomics and metabolomics, carry less ethically-charged information than measures of the germ line genome. However, theoretical issues that have been raised related to withholding therapy based on a specific genotype which could also apply to a specific expression profile. Potential solutions for these challenges are discussed, such as maintaining a connection with research participants through a trusted third party, using electronic means to manage that contact and reconsent subjects. A flexible, secure information technology infrastructure is proposed to manage and search consent forms, provide the ability to collect additional data and consent while maintaining participant confidentiality.

Access to Information↗
PubMed2003

"Cancer in the family" and genetic testing: implications for life insurance.

The potential for discrimination when applying for insurance can be of concern for individuals with a family history of cancer or of a genetic disorder and who are considering genetic counselling or genetic testing. The actual incidence of "genetic discrimination", however, is not known, despite considerable media coverage of this issue. The clinical details required by insurers have received less attention. We obtained primary application and personal statement forms used by 21 different underwriters of voluntary life insurance and found substantial differences in the information requested about family history and genetic testing. All insurance applications, however, contained a duty of disclosure that would require revealing the result, if known by the applicant, of a genetic test in a family member. Therefore, decisions made by family members can affect insurance applications, and people considering genetic testing may also need to consider the implications of the results for other family members. Health practitioners should balance the potential benefits of appropriate genetic testing against potential restriction to life and income-protection insurance when advising people about genetic testing.

Australia↗
PubMed2003

Personnel standards and quality assurance practices of biochemical genetic testing laboratories in the United States.

CONTEXT: It has been suggested that specific regulation of laboratories performing genetic testing may be needed to ensure standards and quality assurance, and to safeguard the rights of patients with regard to confidentiality and providing informed consent. Previously, a comprehensive analysis of current practices of molecular genetic testing laboratories was conducted, the results of which have assisted in the assessment of the need for regulation and its impact on access to testing. However, a study designed to determine clinical laboratory practices with regard to biochemical genetic testing has not been carried out. OBJECTIVE: To collect and analyze data regarding availability of clinical biochemical genetic testing, personnel standards, and laboratory quality assurance practices. DESIGN: A mail survey of biochemical genetic testing laboratory directors and assignment of a quality assurance score based on responses to genetic testing process items. SETTING: Hospital-based, independent, and research-based biochemical genetic testing laboratories in the United States. PARTICIPANTS: Directors of biochemical genetic testing laboratories (n = 133; response rate 68.5%). MAIN OUTCOME MEASURE: Laboratory process quality assurance score based on the standards defined by the American College of Medical Genetics Laboratory Practice Committee. RESULTS: Personnel qualifications varied, although all directors had doctoral degrees. The mean quality assurance score was 77% (range 28%-100%). Higher scores were associated with the following variables: test director having an MD degree versus PhD degree (P = .002), director board certification in biochemical genetics (P = .002), research and hospital laboratory versus independent laboratory setting (P < .001), and participation in a proficiency testing program (P = .03). Twelve percent of participants had a confidentiality policy, and 19% required informed consent before testing. CONCLUSION: The finding that a number of laboratories had quality assurance scores that may reflect suboptimal laboratory practices, particularly with regard to reporting practices, suggests that personnel qualification and laboratory practice standards may be in need of improvement to ensure quality in clinical biochemical genetic testing laboratories, as well as the appropriate clinical use of the test results.

Genetic Diseases, Inborn↗
PubMedDate not supplied

Utility and limitations of genetic testing and information.

This article introduces some of the issues involved in genetic testing and information, particularly the utility and limitations of such testing. Psychosocial and ethical issues that may arise in this area are also discussed. The aim of this article is to stimulate readers' awareness of and insight into these matters in the hope that practitioners will examine and reflect on the applicability of these to their area of practice.

Conflict, Psychological↗