Genetic Counseling and the Uses of Genetic Knowledge — An Ethical Overview

MOKSLAS, GENETINĖS ŽINIOS IR ŽMOGAUS KŪNAS

Problemos ◽

10.15388/problemos.2012.0.1290 ◽

2012 ◽

Vol 81 ◽

pp. 67-78 ◽

Cited By ~ 1

Author(s):

Charalambos Tsekeris ◽

George Alexias

Keyword(s):

Genetic Counseling ◽

Huntington's Disease ◽

Huntington’S Disease ◽

Human Body ◽

Scientific Knowledge ◽

Genetic Knowledge ◽

Theoretical Literature ◽

Emergent Discourse ◽

Bodily Knowledge

Straipsnyje apžvelgiamas mokslo ir mokslinio pažinimo dinaminis pobūdis besikeičiančioje biotechnologijų eroje, taip pat besiformuojantis genetizacijosdiskursas ir jo reikšmė genetiniam konsultavimui (akcentuojant Huntingtono ligą) ir žmogaus kūnui. Žvelgiant iš daugiadalykės perspektyvos, siekiamanuodugniai ištirti ir kritiškai įvertinti šiuolaikinę kritinę literatūrą, skirtą šiems atskiriems, tačiau susipynusiems klausimams. Straipsnyje taip pat kviečiamasvarstyti, ką reiškia būti žmogumi ir kaip tvarkyti genetinį ir kūno pažinimą bei praktikas.Pagrindiniai žodžiai: mokslas, genetinis pažinimas, žmogaus kūnas, gamta, etika.Science, Genetic Knowledge and the Human BodyCharalambos Tsekeris, George Alexias SummaryThis paper aims to overview the dynamical character of science and scientific knowledge within the changing biotechnological era, as well as the emergent discourse of geneticization and its relevance to genetic counseling (with particular emphasis on Huntington’s Disease) and the human body. Its mainpurpose is to carefully explore and comprehensively critique the contemporary theoretical literature on these distinct but interdependent issues from an interdisciplinary standpoint. The paper encourages further critical contributions to thinking about what it means to be human, as well as about how to copewith current genetic and bodily knowledge and practices.Key words: science, genetic knowledge, human body, nature, ethics.

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Spinal Muscular Atrophy Genetic Counseling Access and Genetic Knowledge: Parents' Perspectives

Journal of Child Neurology ◽

10.1177/0883073807305672 ◽

2007 ◽

Vol 22 (8) ◽

pp. 1019-1026 ◽

Cited By ~ 28

Author(s):

Candice Meldrum ◽

Charles Scott ◽

Kathryn J. Swoboda

Keyword(s):

Genetic Counseling ◽

Spinal Muscular Atrophy ◽

Muscular Atrophy ◽

Genetic Knowledge

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Impact of Previous Genetic Counseling and Objective Numeracy on Accurate Interpretation of a Pharmacogenetics Test Report

Public Health Genomics ◽

10.1159/000512476 ◽

2021 ◽

pp. 1-7

Author(s):

Kelly Drelles ◽

Robert Pilarski ◽

Kandamurugu Manickam ◽

Abigail B. Shoben ◽

Amanda Ewart Toland

Keyword(s):

Genetic Counseling ◽

General Population ◽

Adverse Drug Events ◽

Medication Management ◽

Drug Efficacy ◽

Management Decision ◽

Genetic Knowledge ◽

Test Interpretation ◽

Test Report ◽

Genetic Literacy

Introduction: Pharmacogenetic (PGx) testing can be useful for providing information about a patient’s drug response by increasing drug efficacy and decreasing the incidence of adverse drug events. While PGx tests were previously only offered to patients under healthcare provider supervision, they are now available as direct to consumer (DTC) tests. This study aimed to assess how accurately individuals from the general population were able to interpret a sample PGx test report and if accuracy differed based on individuals’ numeracy or prior genetic counseling (GC). Methods: We surveyed 293 individuals from the general population, ascertained through ResearchMatch. The survey included questions about PGx test interpretation, numeracy, and genetic literacy. Results: In our cohort, numeracy level impacted PGx result interpretation, with those of high numeracy performing statistically significantly better on both the table format and graphical format (p value = 0.002 and p value <0.001, respectively) and genetic knowledge questions (p value <0.001) than those with low/average numeracy. In addition, previous GC did not impact test interpretation or genetic knowledge, but the number of individuals with prior GC was small (n = 26). Discussion/Conclusion: We found that numeracy had a significant impact on correct interpretation of PGx test reports. Because many individuals in the USA have low numeracy levels, it is extremely important that patients do not make their own medication management decision based on the test results and that they consult with their physicians about their PGx testing. The importance of consultation and discussion with providers about results should be emphasized on the test report.

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