Literature DB >> 22368105

The wide variation of definitions of genetic testing in international recommendations, guidelines and reports.

Jorge Sequeiros1, Milena Paneque, Bárbara Guimarães, Elina Rantanen, Poupak Javaher, Irma Nippert, Jörg Schmidtke, Helena Kääriäainen, Ulf Kristoffersson, Jean-Jacques Cassiman.   

Abstract

In spite of being very commonly used, the term genetic testing is debatable and used with several meanings. The diversity of existing definitions is confusing for scientists, clinicians and other professionals, health authorities, legislators and regulating agencies and the civil society in general, particularly when genetic testing is the object of guidelines or legal documents. This work compares definitions of genetic testing found in recommendations, guidelines and reports from international institutions, policy makers and professional organizations, but also in documents from other stakeholders in the field, as the pharmaceutical industry, insurers, ethics bodies, patient organizations or human-rights associations. A systematic review of these documents confirmed the extreme variability existing in the concepts and the ambiguous or equivocal use of the term. Some definitions (narrower) focus on methodologies or the material analysed, while others (broader) are information- or context-based. Its scope may range from being synonymous of just DNA analysis, to any test that yields genetic data. Genetic testing and genetic information, which may be derived from a range of medical exams or even family history, are often used interchangeably. Genetic testing and genetic screening are sometimes confused. Human molecular genetics (a discipline) is not always distinguished from molecular biology (a tool). Professional background, geographical context and purpose of the organizations may influence scope and usage. A common consensus definition does not exist. Nevertheless, a clear set of precise definitions may help creating a common language among geneticists and other health professionals. Moreover, a clear context-dependent, operative definition should always be given.

Entities:  

Year:  2012        PMID: 22368105      PMCID: PMC3312940          DOI: 10.1007/s12687-012-0084-2

Source DB:  PubMed          Journal:  J Community Genet        ISSN: 1868-310X


  8 in total

Review 1.  Genetic information and testing in insurance and employment: technical, social and ethical issues.

Authors:  Béatrice Godard; Sandy Raeburn; Marcus Pembrey; Martin Bobrow; Peter Farndon; Ségolène Aymé
Journal:  Eur J Hum Genet       Date:  2003-12       Impact factor: 4.246

2.  Genetic information and testing in insurance and employment: technical, social and ethical issues.

Authors: 
Journal:  Eur J Hum Genet       Date:  2003-12       Impact factor: 4.246

3.  Towards quality assurance and harmonization of genetic testing services in the European Union.

Authors:  Dolores Ibarreta; Robert Elles; Jean-Jacques Cassiman; Emilio Rodriguez-Cerezo; Elisabeth Dequeker
Journal:  Nat Biotechnol       Date:  2004-10       Impact factor: 54.908

Review 4.  Genetic tests and their evaluation: can we answer the key questions?

Authors:  Mark Kroese; Ron L Zimmern; Simon Sanderson
Journal:  Genet Med       Date:  2004 Nov-Dec       Impact factor: 8.822

5.  Definitions of genetic testing in European legal documents.

Authors:  Orsolya Varga; Sirpa Soini; Helena Kääriäinen; Jean-Jacques Cassiman; Irmgard Nippert; Wolf Rogowski; Herman Nys; Ulf Kristoffersson; Jörg Schmidtke; Jorge Sequeiros
Journal:  J Community Genet       Date:  2012-01-26

6.  Scope of definitions of genetic testing: evidence from a EuroGentest survey.

Authors:  Jorge Pinto-Basto; Bárbara Guimarães; Elina Rantanen; Poupak Javaher; Irma Nippert; Jean-Jacques Cassiman; Helena Kääriäinen; Ulf Kristoffersson; Jörg Schmidtke; Jorge Sequeiros
Journal:  J Community Genet       Date:  2010-03-16

7.  The urge to converge. A network primed for data and high-quality voice over IP can accomplish plenty.

Authors:  Pamela Tabar
Journal:  Healthc Inform       Date:  2005-09

8.  Genetic testing and insurance. The Ad Hoc Committee on Genetic Testing/Insurance Issues.

Authors: 
Journal:  Am J Hum Genet       Date:  1995-01       Impact factor: 11.025

  8 in total
  10 in total

1.  Definitions of genetic testing in European legal documents.

Authors:  Orsolya Varga; Sirpa Soini; Helena Kääriäinen; Jean-Jacques Cassiman; Irmgard Nippert; Wolf Rogowski; Herman Nys; Ulf Kristoffersson; Jörg Schmidtke; Jorge Sequeiros
Journal:  J Community Genet       Date:  2012-01-26

2.  Editorial: genetics and democracy.

Authors:  Maria Hedlund; Niclas Hagen; Ulf Kristoffersson
Journal:  J Community Genet       Date:  2012-03-09

3.  Issues concerning the evaluation and regulation of predictive genetic testing.

Authors:  R L Zimmern
Journal:  J Community Genet       Date:  2012-07-08

4.  Criteria for fairly allocating scarce health-care resources to genetic tests: which matter most?

Authors:  Wolf H Rogowski; Scott D Grosse; Jörg Schmidtke; Georg Marckmann
Journal:  Eur J Hum Genet       Date:  2013-08-07       Impact factor: 4.246

Review 5.  Molecular genetic testing and the future of clinical genomics.

Authors:  Sara Huston Katsanis; Nicholas Katsanis
Journal:  Nat Rev Genet       Date:  2013-06       Impact factor: 53.242

6.  How the electronic health record will change the future of health care.

Authors:  Jeremiah Geronimo Ronquillo
Journal:  Yale J Biol Med       Date:  2012-09-25

7.  The Use of Non-Variant Sites to Improve the Clinical Assessment of Whole-Genome Sequence Data.

Authors:  Alberto Ferrarini; Luciano Xumerle; Francesca Griggio; Marianna Garonzi; Chiara Cantaloni; Cesare Centomo; Sergio Marin Vargas; Patrick Descombes; Julien Marquis; Sebastiano Collino; Claudio Franceschi; Paolo Garagnani; Benjamin A Salisbury; John Max Harvey; Massimo Delledonne
Journal:  PLoS One       Date:  2015-07-06       Impact factor: 3.240

8.  Genomic research in Zambia: confronting the ethics, policy and regulatory frontiers in the 21st Century.

Authors:  Pascalina Chanda-Kapata; Nathan Kapata; Albertina Ngomah Moraes; Gershom Chongwe; James Munthali
Journal:  Health Res Policy Syst       Date:  2015-10-29

Review 9.  Mapping the Diverse and Inclusive Future of Parkinson's Disease Genetics and Its Widespread Impact.

Authors:  Inas Elsayed; Alejandro Martinez-Carrasco; Mario Cornejo-Olivas; Sara Bandres-Ciga
Journal:  Genes (Basel)       Date:  2021-10-23       Impact factor: 4.096

10.  ClinLabGeneticist: a tool for clinical management of genetic variants from whole exome sequencing in clinical genetic laboratories.

Authors:  Jinlian Wang; Jun Liao; Jinglan Zhang; Wei-Yi Cheng; Jörg Hakenberg; Meng Ma; Bryn D Webb; Rajasekar Ramasamudram-Chakravarthi; Lisa Karger; Lakshmi Mehta; Ruth Kornreich; George A Diaz; Shuyu Li; Lisa Edelmann; Rong Chen
Journal:  Genome Med       Date:  2015-07-29       Impact factor: 11.117

  10 in total

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