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Results for “Genetic Privacy”

Search indexed PubMed citations on genomics, clinical trials, systematic reviews and public health. Explore titles, authors and supplied subject terms, then open the PubMed record.

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At least 361 records · Page 20Linked to original sources
PubMed1996

Screening and the new genetics; a public health perspective on the ethical debate.

Advances in the diagnostic applications of molecular genetics have made possible the identification of recessive carrier states in the population. The debate surrounding screening for cystic fibrosis therefore has a public health significance which transcends that specific disorder. The two most frequently cited objectives of screening for a recessive carrier state are to reduce the prevalence of the disorder and to inform the reproductive choices of individuals and couples at risk. The later aim represents a paradigm shift in the philosophy of screening in that no preventive principle is involved. Instead, information is regarded as worth while in itself, regardless of outcome. The authors argue that the benefits arising from the information generated in the course of genetic carrier screening cannot be presumed merely by asserting a "right to know' ethical imperative, and draw attention to the danger that a combination of technical capability, professional zeal and consumer demand will override currently accepted screening principles. In this event, future efforts to subject screening programmes to rational evaluation could be undermined.

Adult↗
PubMedDate not supplied

Diffuse gastric cancer.

Gastric cancer is one of the leading causes of cancer deaths around the world. This article provides an overview of gastric cancer using a unique case study involving a New Zealand Maori family genetically predisposed to diffuse gastric cancer. The pathophysiology of diffuse gastric cancer, including prognosis, diagnosis, and treatment, along with important patient considerations is highlighted.

Adult↗
PubMed1994

Ethical issues involved in establishing a registry for familial Alzheimer's disease.

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.

Aged↗
PubMed1993

Measuring physicians' tolerance for ambiguity and its relationship to their reported practices regarding genetic testing.

Despite uncertainties in medicine, attempts to study physicians' tolerance for uncertainty have been few, and limited by the measurement instruments available. This paper describes development of a modified tolerance for ambiguity (TFA) scale, and correlates it with several physician characteristics and reported behaviors. Eighteen TFA items were included in a national survey of physicians' knowledge and attitudes about genetic testing. Sixty-five percent (n = 1,140) of 1,759 obstetricians, pediatricians, internists, family practitioners, and psychiatrists responded. After psychometric analyses, the scale was reduced to 7 items, demonstrating an acceptable reliability (Cronbach's alpha = .75). TFA was higher among psychiatrists than other specialties, among those who were older when they graduated from medical school, and among those willing to offer a new low-cost, accurate predictive test when none of their colleagues do. TFA was lower among those who indicated that attendance at religious services was important, among those who would make a recommendation to their patients regarding pregnancy termination after prenatal diagnosis, and among those who would withhold negative genetic test results. Future research is needed on the scale itself, and to assess factors affecting TFA, such as its susceptibility to modification, and its potential association with clinical practice in other areas of medicine that are characterized by ambiguity.

Abortion, Therapeutic↗
PubMedDate not supplied

Issues in genetic testing of children.

Commentary about the ethical issues involved in the genetic testing in children (GTIC) has centered around beliefs that early testing of children when no medical benefits are anticipated should be discouraged. This article discusses the types of GTIC and the contexts of possible testing scenarios, and provides a review of the current research into the effects of such testing on children and their families. As data cannot support either substantive benefits or harms accrued after GTIC, it is recommended that the traditional ethical analysis based on principled theory be augmented by theories that reflect a family-centered ethic.

Child↗
PubMedDate not supplied

Genetic testing and counseling: selected ethical issues.

As science and technology in genetics continue to expand, complex ethical questions arise that require difficult decisions for all concerned. Rather than having ready-made answers, there may be only more challenging questions for patients, families, and healthcare professionals. These complicated questions may have no straightforward, correct answers, thus creating an ethical quandary. This article discusses some selected ethical issues that occur when patients are considering undergoing genetic testing and counseling, including respecting autonomy and the patient's right to decide, establishing patient-healthcare provider trust, and disclosing private information to others. Several strategies are presented that nurses can use as they assist patients and their families who are facing these challenging ethical dilemmas.

Communication↗
PubMed2002

Ethical reflections on pharmacogenetics and DNA banking in a cohort of HIV-infected patients.

The aim of this study was to analyse ethical issues concerning the storage of human biological samples to be used in genetic analyses and pharmacogenetic research based on a French experience of DNA banking in a cohort of human immunodeficiency virus (HIV)-infected patients started on a protease inhibitor-containing treatment. We describe the ethical issues raised during the establishment of a DNA bank, including questions dealing with autonomy, benefit to the patient, information sharing and confidentiality as well as guarantees concerning the storage and use of DNA. The practical applications of themes illustrated theoretically in the literature are discussed. Most of the points raised are not specific to HIV, but some of them may be more accurate due to the characteristics of the HIV population, which is more involved in the social debate through the community life and the increased risk of stigmatization. Our results are summarized in the memorandum and consent form presented in the Appendices. One issue still open to discussion is the way the results of genetic data will be given to the patients. This work should allow other researchers and members of evaluation committees to enrich their considerations and should stimulate discussion on this topic.

Biological Specimen Banks↗
PubMed2001

Human biological materials in research: ethical issues and the role of stewardship in minimizing research risks.

Recent scientific and technologic advances generated from the human genome project have increased the ability of researchers to study human biological materials. This has enhanced the ease with which highly personal information such as genetic makeup can be revealed about individuals, families, and communities. In addition, a change in the societal value of human biological tissue from waste to commercial resource has occurred. A new model of stewardship is developed that can be used as a guide for protecting human research participants who are involved in studies that include collecting and handling human biological samples. Nursing implications to ensure protection of human research participants are discussed.

Attitude to Health↗
PubMed1999

Ethical issues in the use of genetic markers in occupational epidemiologic research.

This review was conducted to characterize the nature of contemporary occupational epidemiologic research involving genetic markers, consider how genetic information is unique with regard to its social applications, and examine some of the ethical dilemmas that may arise over the course of studies. We have reviewed the literature and the lessons from our experience in conducting occupational epidemiologic research involving genetic markers. This review describes how occupational epidemiologic studies differ from other epidemiologic studies on issues of participation, confidentiality, and the history of including genetic markers. Of primary concern in occupational studies are genes that have multiple alleles and are sometimes referred to as "metabolic polymorphisms." They generally do not confer risk on their own but rather only in combination with a specific exposure. There is a need for a clear policy and guidelines for the conduct of occupational epidemiologic studies using genetic material. This policy should address all of the steps in study design, implementation, interpretation, and communication of results.

Epidemiologic Studies↗
PubMedDate not supplied

Australian empirical study into genetic discrimination.

This paper outlines a major empirical study that is being undertaken by an interdisciplinary team into genetic discrimination in Australia. The 3-year study will examine the nature and extent of this newly emerging phenomenon across the perspectives of consumers, third parties, and the legal system and will analyze its social and legal dimensions. Although the project is confined to Australia, it is expected that the outcomes will have significance for the wider research community as this is the most substantial study of its kind to be undertaken to date into genetic discrimination.

Australia↗
PubMed2003

Genetic testing: costs and access to intensive care unit care.

Critically ill patients require significant medical care and use limited healthcare resources. Furthermore, the mortality rate from most forms of critical illness is much higher than for noncritically ill hospitalized patients. Although genetic diseases increase mortality, most are easily identified at birth and have only limited treatments and prognoses. Recently, more subtle single nucleotide polymorphisms at key loci have been demonstrated to result in a profoundly different prevalences of acute illness and subsequent survival rates for subjects with apparently similar insults and otherwise similar phenotypes. With the maturation of the human genome project, this new discovery will allow for the characterization of individual subject's responsiveness and potential for recovery from a number of insults. This realization makes our definition of genetic diseases blurred and begs the questions, "Will these new insights allow for more effective healthcare resource utilization, as defined from patient, healthcare system, and societal perspectives?" and, perhaps more worrisome, "Should intensive care resources be limited to those with the greatest chance of benefit?" Similarly, as with other genetic predispositions such as cystic fibrosis and congenital hypercholesterolemia, to what extent should these data be available outside the patient-doctor relationship?

Critical Care↗