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Kimberly A Quaid

Publications and source records attributed to Kimberly A Quaid.

6 recordsLinked to original sources
PubMed2004

Ethical issues in the collection, storage, and research use of human biological materials.

Human biological materials (HBMs) are samples of blood, DNA, organs and tissues commonly obtained during routine surgical procedures or through direct donation by an individual. This article reviews four of the most pressing issues arising from the collection, storage, and use of HBMs in research: current regulations governing research with human subjects, misuse of genetic information, economic factors, and public knowledge.

Blood↗
PubMed2004

Disclosure of genetic information obtained through research.

The rapid expansion of information and knowledge of genetics has implications for the question of whether, and under what circumstances, information discovered in the course of genetic research should be conveyed to research participants and/or their relatives. The aim of this paper is to propose an ethically defensible solution to a specific case example illustrating this problem. To do this we reviewed the literature to find answers to the following three questions: (1) What do current regulations, guidelines, and commentary say about the disclosure of genetic risk information obtained through research to research participants? (2) What do current regulations, guidelines, and commentary say about the disclosure of genetic risk information obtained through research to the relatives of research subjects? and (3) What do current regulations, guidelines, and commentary say about the disclosure of genetic risk information obtained through research about former research participants who are now deceased? Our conclusion is that current U.S. federal guidelines governing the use of human subjects in research, as well as much of the current literature, do not adequately address the familial dimension inherent in genetic research, are virtually silent on the issue of sharing information of relevance to family members, and do not protect the deceased. It is our belief that this omission needs to be corrected and that explicit guidance on this issue needs to be provided to institutional review boards and researchers alike.

Genetic Counseling↗
PubMed1991

Predictive testing for HD: maximizing patient autonomy.

In "The Ethical Justification for Minimal Paternalism in the Use of the Predictive Test for Huntington's Disease," David DeGrazia attempts to provide a rational analysis of the exclusion criteria and counseling requirements for predictive testing proposed by the Huntington's Disease Society of America (HDSA). The need for analysis is clear. These protocols and procedures for predictive testing for Huntington's disease (HD) are being used as models for testing programs for any number of genetic conditions. DeGrazia concludes that the HDSA guidelines are reasonable, a conclusion with which I agree. However, I believe that DeGrazia, by placing his analysis within the framework of autonomy versus paternalism, overlooks both the fundamental rationale for the testing procedures and the true barriers to testing.... The difficulties encountered during the testing process clearly demonstrated the failure of abstract principles to deal with real life.

Counseling↗
PubMedDate not supplied

Who seeks genetic susceptibility testing for Alzheimer's disease? Findings from a multisite, randomized clinical trial.

PURPOSE: Alzheimer's disease, for which one form of the apolipoprotein E (APOE) genotype is a risk factor, provides a paradigm in which to examine response to susceptibility testing for common, complex diseases. This study's main purposes were to estimate interest in such testing and to examine demographic predictors of study participation. METHODS: In this 3-site, randomized clinical trial (RCT), the intervention was a risk assessment program wherein genetic counselors educated adult children of AD patients about lifetime risk of disease based on their gender, family history, and APOE genotype. Two groups of participants were followed from initial contact to RCT enrollment: those who were systematically contacted through research registries, and those who were self-referred. RESULTS: Of 196 systematically contacted participants, 47, or 24%, progressed from initial contact to RCT enrollment. These participants were more likely to be below age 60 (adjusted OR = 3.83, P < 0.01) and college educated (adjusted OR = 3.48, P < 0.01). Of 179 self-referred participants, 115, or 64%, progressed from initial contact to RCT enrollment. Most self-referred participants had a college education and were female (79%). CONCLUSIONS: In the first RCT to examine genetic susceptibility testing for AD, uptake rates were sufficiently high to merit concern that future test demand may strain available education and counseling resources. Findings suggest that susceptibility testing for AD may be of particular interest to women, college educated persons, and persons below age 60.

Adult↗