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Is informed choice in genetic testing a different breed of informed decision‐making? A discussion paper

Bibliographic Data

ID19507366
AuthorsJon D Emery (0000-0002-5274-6336, University of Oxford, corresponding author), Jon Emery
Year2001
Volume4
Issue2
Pages81-86
Publication date2001-06-25
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueHealth Expectations (JOURNAL)
Journal identifiersISSN: 1369-6513 • E-ISSN: 1369-7625
PublisherWiley (PUBLISHER • GB)
DOI10.1046/j.1369-6513.2001.00124.x
PMID11359537
OpenAlexW1980585629
LanguageEN
Citations received6
References cited18

Traditionally genetic counselling has promoted a non‐directive approach to patients’ decision‐making but the feasibility of this has been questioned. Unlike most branches of medicine, which are shifting away from a paternalistic model, genetic counselling is approaching shared decision‐making from a different perspective. There are certain features of genetic counselling and genetic testing which may complicate the drive towards shared decision‐making and informed choice: 1. Genetic test results can have broader implications than non‐genetic test results. 2. Genetic test results may be perceived by the patient differently to non‐genetic test results. 3. Carrier status for autosomal recessive conditions may be difficult for patients to conceptualize. 4. Decisions in genetic counselling are often multiple and sequential. 5. Most information in genetic counselling is based on probabilities and uncertainties. Each of these features is discussed in relation to achieving shared decision‐making in genetic testing and the implications for genetic counsellors are described. The points raised, however, have broader implications for medicine as several of the features, although central to genetic testing, are not entirely unique. Lessons learnt from genetic testing and genetic counselling in achieving shared decision‐making could help develop methods of promoting informed choice in other medical arenas such as cancer screening

Biology · Breed · Genetic testing · Management science · BRCA gene mutations in cancer · Computer Science · Engineering · Ethics in Clinical Research · Patient Dignity and Privacy · Psychology · Genetics

  • An integrative model of shared decision making in medical encounters

    Open Access•Gregory Makoul, Marla L Clayman•Patient Education and Counseling•2006

  • Informed Choice and Deaf Children

    A Young•The Journal of Deaf Studies and…•2006

  • Participation in screening programmes

    Open Access•Vikki Entwistle•Health Expectations•2001

  • Assessment of genetic testing and related counseling services

    Open Access•Catharine Wang, Richard Gonzalez et al.•Social Science & Medicine•2004

  • Providing solutions-defining problems

    Open Access•Lene Koch, M N Svendsen•Social Science & Medicine•2005

  • Making sense of risk diagnosis in case of prenatal and reproductive genetic counselling for neuromuscular diseases

    Open Access•Antonella Zaccaro, Maria Francesca Freda•Journal of Health Psychology•2014

  • Paternalism or partnership?

    Open Access•Angela Coulter•BMJ•1999

  • Informed Decision Making in Outpatient Practice

    Clarence H Braddock, Clarence H Braddock III et al.•JAMA•1999

  • Will genetic testing for predisposition for disease result in fatalism? A qualitative study of parents responses to neonatal screening for familial hypercholesterolaemia

    Open Access•Victoria Senior, Theresa M Marteau et al.•Social Science & Medicine•1999

  • The new genetics

    Open Access•M P M Richards, Matt Richards•Sociology of Health & Illness•1993

Unique citing works6
Citations per year0,24
Citation span2001 - 2014 (14)
Citation velocityhistorical
Highly citedNo
Citation typesNeutral: 6

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