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At least 649 records · Page 36Linked to original sources
PubMed2002

[Present situation of the genetic medical treatment].

Medical treatment has been changing due to the recent and great progress in the molecule genetics. Gene tests are contained in the ordinary medical treatments. However, this progress in Japan has apparently thrown the general population into confusion, at least in part because of the lack of consent between inhabitants and clinicians/researchers. Some of the genetic diseases are difficult to be cured completely, although they can be diagnosed. Furthermore, genetic diseases spread the influences to other relations including their offspring. The preparation of the various genetic guidelines and the fulfillment of the genetic counseling are going to proceed to keep the human rights of the patients of the genetic diseases. A discussion of the bio-ethical problems has been developing at the same time. The necessity against the genetic service is increasing gradually. Genetic medical treatment may be a part of the genetic service. I report here the current status of "the genetic counseling and the genetic medical treatment" have been advanced in Nagasaki university hospital as an example. It is very important and expected that a proper genetic service is provided to the clients under the network of the specialists of the various fields.

Bioethics↗
PubMed1999

Breaking the stalemate: a prospective regulatory framework for unforseen research uses of human tissue samples and health information.

The legal and ethical issues raised by new research uses of previously collected human tissues and health information are increasingly important to genetics research. This Article discusses and criticizes current positions on such uses, including the recent report of the National Bioethics Advisory Commission, Research Involving Human Biological Materials. It then proposes a new regulatory framework for tissue and information collected in the future that would better protect the interests of the people who provide them. It ends by suggesting a resolution for the problems of previously collected tissue and information.

Advisory Committees↗
PubMed2000

Misusing informed consent: a critique of limitations on research subjects' access to genetic research results.

Express denials of access to genetic research results are being drafted into consent instruments. Some commentators suggest that the principle of beneficence can justify such a denial of access. This paper provides an ethical and legal critique of the use of consent instruments to disclaim responsibility for on-going disclosure by genetic researchers. Currently, the law of torts provides only weak protection for on-going disclosure for research subjects. The most substantive rights are to be found in the law of fiduciary obligations. The author concludes that, notwithstanding arguments to the contrary, there should be a presumption of disclosure in genetic research, unless the research subject elects otherwise. The author outlines one possible exception to this general presumption.

Canada↗
PubMed2003

[Ethical aspects of biological sample banks].

Numerous activities in the domain of epidemiology require the constitution or the use of biological sample banks. Such biobanks raise ethical issues. A number of recommendations are applicable to this field, in France and elsewhere. Major principles applicable to biobanks include the respect of person's autonomy, the respect of human body, the respect of confidentiality. These principles are translated into practices through the following procedures: relevant information to the persons regarding their sample management prior to informed consent, opinion of an independent ethics committee, actual implementation of conditions for protecting samples and data. However, although those principles may appear quite simple and obvious, in the context of a largely international practice of research and given the large variety of biobanks, it is not always obvious for researchers to find their way. The attitudes vary between countries, there are numerous texts for various types of biobanks, the same texts raise different interpretations in different institutions, there are new ethical opinions expressed, and mainly the novelty of questions raised by the uses of samples that are possible today, especially in genetics, and were not foreseeable at the time of sampling make the field difficult in practice. This article reviews the types of biobanks, the relevant ethical issues. It also underlines the still unclear or ambiguous situations using some examples of practical situations.

Bioethical Issues↗
PubMed2000

Genetics, parenting, and children's rights in the twenty-first century.

Not only do genetic traits sometimes translate into physical and mental illnesses, they may also manifest themselves as tendencies towards certain behaviours. This discovery has led to the misinterpretation and misapplication of genetic information, and has been directed to unforeseen uses, from criminal defence to genetic racism. The issue is especially sensitive when deciding if and when parents should have access to the genetic information of their children. The author begins with an overview of the principles of behavioural genetics and types of behaviour currently under study. Next, the social and psychological risks associated with genetic testing are presented, along with guidelines necessary to distinguish between testing which is therapeutic and that which is non-therapeutic. The distinction is a crucial one, as the author proposes a therapeutic-benefit test, advocating testing only where an effective intervention is available. Finally, the author concludes that legislation is the more appropriate medium for defining the extent of parental rights once intervention is allowed rather than leaving physicians to decide on a case-by-case basis.

Age of Onset↗
PubMed2000

Selective justice, genetic discrimination, and insurance: should we single out genes in our laws?

This article discusses the desirability of legislation focusing on genetic discrimination, in particular in the context of insurance. Many American states and some European countries as well as the Council of Europe have introduced protective measures against discrimination on the basis of genetic susceptibility. The author questions their effectiveness and queries whether they may be inequitable, because they fail to address more fundamental underlying issues related to the nature of insurance, access to health care, and unequal distribution of wealth. There is also a problem of definition in these statutes. They fail to capture what constitutes genetic information. Nonetheless, the author argues it is important to consider the social consequences of genetic testing. Michael Walzer's theory of justice is used to examine the role of insurance and health care. Using this approach, the author finds the American system of distribution for health care to be problematic. This is then used to inform the author's discussion of the future of health care in Canada. Anti-discrimination provisions could be used in a way that is consistent with Walzer's theory of justice. They would encompass both genetic and non-genetic health factors. These can be modelled on current anti-discrimination statutes in Canada. The author then proposes administrative committee structures to regulate the use of genetic data in Canada.

Advisory Committees↗
PubMedDate not supplied

[Ethics, politics, and rights in pharmacogenomics].

The article focuses in three aspects. Firstly, distinctions are drawn between pharmacogenetic testing and other types of genetic test, and the advantages of pharmacogenomics for individuals and society generally are discussed. Secondly, the article examines some of the ethical problems raised by research in and clinical aspects of pharmacogenomics. Thirdly and lastly, a number of risk potentially associated with this new technology are discussed.

Clinical Trials as Topic↗
PubMed1999

Legal rules and industry norms: the impact of laws restricting health insurers' use of genetic information.

Since 1991, twenty-eight 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. Using multiple data sources, it concludes that there are almost no well-documented cases of health insurers asking for or using pre-symptomatic genetic test results in their underwriting decisions either before or after these laws, or in states with or without these laws. At present, health insurers are not thinking about or interested in using genetic information of this sort. Using this information is not cost effective and is not seen as contributing significantly to underwriting accuracy. However, if genetic testing information were easily available, some health insurers would consider using it in some fashion if that were legal. In the future, such information could become much more relevant to health insurers than it is now. Therefore, the major effect of these laws is to make 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 helped to convince the industry that it is not appropriate or socially legitimate to use this information. Thus, these laws have caused the insurance industry to embrace more socially oriented norms and attitudes.

Evaluation Studies as Topic↗