Showing papers by "Bartha Maria Knoppers published in 1994"
TL;DR: A review of the last 5 years reveals several areas of international consensus that could serve to harmonize eventual national regulation and ensure that these international areas of "commonalty" are reinforced and adopted by the HGP.
Abstract: At first glance, the Human Genome Project (HGP) seems ungoverned by any explicit ethical or legal norms. However, from its beginnings the HGP has spawned a myriad of international (1-9), regional (10-14), and national (15-38) reports and guidelines and, more recently, some legislation (39-47). A review of the last 5 years (December 1989 to July 1994) reveals several areas of international consensus that could serve to harmonize eventual national regulation. Five basic principles underlie this consensus: autonomy, privacy, justice, equity, and quality out of respect for human dignity. Ensuring that these international areas of \"commonalty\" are reinforced and adopted by the HGP is an ethical and political challenge--a unique opportunity to direct rather than react. Autonomy. Genetic testing and the resulting information is highly personal. Because this information could be used to discriminate against individuals on socioeconomic grounds--for example, in selecting employees, immigrants, or insurance applicants---there has been a call for voluntary testing based on autonomous choice, with the participants having full information. The \"right\" not to know is increasingly raised as a corollary of autonomy. Most genetic information is only predictive and • probabilistic--a certain gene may increase the likelihood of developing a disease. Indeed, it is this imprecise nature of genetic information that necessitates further protection against social pressures and a reaffirmation of informed consent procedures. Therefore, counseling has become a prerequisite to the decision to undergo testing. An exception to this principle of individual consent is newborn screening programs for immediately treatable disorders. A recent report from the United States, however, has explicitly recommended that parental • consent be obtained (34). • There is consensus limiting genetic testing (including prenatal testing) to tests that are medically therapeutic. Which tests are considered to be therapeutic then r e -
65 citations
TL;DR: Initial considerations of the field work involved in developing a registry pertaining to genetic testing for AD/FAD by linkage analysis are examined and some preliminary observations on the experience of the first year of this project are offered.
Abstract: In January 1992, the IMAGE Project extended the establishment of its registry of familial Alzheimer cases to all areas of the province of Quebec, for collection of epidemiological and clinical data, as well as biological samples. The aim is to study genetic transmission patterns of Alzheimer's disease (AD) and to provide a sampling framework for further etiologic and risk factor studies. The IMAGE registry already includes data of a population-based study in the Saguenay-Lac-St-Jean area; the project to collect data on familial AD (FAD) cases across the province of Quebec is known as the ALGENE Initiative. The registry is thus a collection of "AD families" for both familial and sporadic cases. The establishment of the registry involves several steps in the field work: recruitment and selection of families; collection of information on family medical history; selection of informative families and genetic testing for AD/FAD by linkage analysis. As AD is not homogeneous in its etiology and since we do not know if, in the event that genetics is involved in AD whether or not penetrance of the gene(s) is high, we must be aware of the "genetic horizons" of AD in collecting and conserving data on families of cases, and in the genetic testing for AD/FAD by linkage analysis. Families who choose genetic testing must be aware of the implications of our undertaking, assured of the confidentiality of the test and, at the same time, they must understand its limitations. The experimental nature of our research project raises ethical dilemmas. This article examines these initial considerations of the field work involved in developing a registry pertaining to genetic testing for AD/FAD by linkage analysis and offers some preliminary observations on the experience of the first year of this project.
10 citations
TL;DR: The argument is that even on a national level, biopolicy is "often elusive,*' "unwise," and "codifies answers'* (Bonnicksen, 1992:53, 61). national policies, then, should serve as national policies.
Abstract: Consistent with her previous position promoting a private policy model for genetic testing as a more appropriate response to bioethical and biopolicy issues (1992), Andrea Bonnicksen (1994) advocates developing national policies before international approaches with respect to pre-implantation diagnosis (PD) and pre-implantation therapy (PT?or human germ-line gene therapy). The argument is that even on a national level, biopolicy is "often elusive,*' "unwise," and "codifies answers'* (Bonnicksen, 1992:53, 61). National policies, then, should serve as
5 citations