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Genetic testing of children for adult-onset conditions: opinions of the British adult population and implications for clinical practice.

Shkedi-Rafid S, Fenwick A, Dheensa S, Lucassen AM - Eur. J. Hum. Genet. (2014)

Bottom Line: Participants (n=2998) completed a specially designed questionnaire, distributed by email.Testing for carrier status was supported by a larger proportion (60%).A child's future ability to decide for her/himself if and when to be tested was the least supported argument in favour of deferring testing.

View Article: PubMed Central - PubMed

Affiliation: Clinical Ethics and Law at Southampton (CELS), Academic Department of Clinical Genetics, Faculty of Medicine, University of Southampton, Southampton, UK.

ABSTRACT
This study set out to explore the attitudes of a representative sample of the British public towards genetic testing in children to predict disease in the future. We sought opinions about genetic testing for adult-onset conditions for which no prevention/treatment is available during childhood, and about genetic 'carrier' status to assess future reproductive risks. The study also examined participants' level of agreement with the reasons professional organisations give in favour of deferring such testing. Participants (n=2998) completed a specially designed questionnaire, distributed by email. Nearly half of the sample (47%) agreed that parents should be able to test their child for adult-onset conditions, even if there is no treatment or prevention at time of testing. This runs contrary to professional guidance about genetic testing in children. Testing for carrier status was supported by a larger proportion (60%). A child's future ability to decide for her/himself if and when to be tested was the least supported argument in favour of deferring testing.

No MeSH data available.


Related in: MedlinePlus

Opinions on testing children for adult-onset conditions with no treatment or care in childhood and testing for reproductive risks. (a) Parents should be able to test their young child to see what condition s/he may develop in the future, even if the child would not need any particular treatment or care until they are adults. (b) Parents should be able to test their young child to tell if they are a carrier of a genetic condition.
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fig1: Opinions on testing children for adult-onset conditions with no treatment or care in childhood and testing for reproductive risks. (a) Parents should be able to test their young child to see what condition s/he may develop in the future, even if the child would not need any particular treatment or care until they are adults. (b) Parents should be able to test their young child to tell if they are a carrier of a genetic condition.

Mentions: As demonstrated in Figure 1, nearly half of the respondents (47%, n=1423) agreed that parents should be allowed to test their children for adult-onset conditions, even if the child would not need any particular treatment or care before adulthood. About a third of the sample (33%, n=979) were uncertain about such testing. Only a fifth of the sample (20%, n=596) disagreed that parents should be able to test their children for such conditions and it is interesting to note that this opinion is the one most in line with professional guidance.


Genetic testing of children for adult-onset conditions: opinions of the British adult population and implications for clinical practice.

Shkedi-Rafid S, Fenwick A, Dheensa S, Lucassen AM - Eur. J. Hum. Genet. (2014)

Opinions on testing children for adult-onset conditions with no treatment or care in childhood and testing for reproductive risks. (a) Parents should be able to test their young child to see what condition s/he may develop in the future, even if the child would not need any particular treatment or care until they are adults. (b) Parents should be able to test their young child to tell if they are a carrier of a genetic condition.
© Copyright Policy - open-access
Related In: Results  -  Collection

License
Show All Figures
getmorefigures.php?uid=PMC4592073&req=5

fig1: Opinions on testing children for adult-onset conditions with no treatment or care in childhood and testing for reproductive risks. (a) Parents should be able to test their young child to see what condition s/he may develop in the future, even if the child would not need any particular treatment or care until they are adults. (b) Parents should be able to test their young child to tell if they are a carrier of a genetic condition.
Mentions: As demonstrated in Figure 1, nearly half of the respondents (47%, n=1423) agreed that parents should be allowed to test their children for adult-onset conditions, even if the child would not need any particular treatment or care before adulthood. About a third of the sample (33%, n=979) were uncertain about such testing. Only a fifth of the sample (20%, n=596) disagreed that parents should be able to test their children for such conditions and it is interesting to note that this opinion is the one most in line with professional guidance.

Bottom Line: Participants (n=2998) completed a specially designed questionnaire, distributed by email.Testing for carrier status was supported by a larger proportion (60%).A child's future ability to decide for her/himself if and when to be tested was the least supported argument in favour of deferring testing.

View Article: PubMed Central - PubMed

Affiliation: Clinical Ethics and Law at Southampton (CELS), Academic Department of Clinical Genetics, Faculty of Medicine, University of Southampton, Southampton, UK.

ABSTRACT
This study set out to explore the attitudes of a representative sample of the British public towards genetic testing in children to predict disease in the future. We sought opinions about genetic testing for adult-onset conditions for which no prevention/treatment is available during childhood, and about genetic 'carrier' status to assess future reproductive risks. The study also examined participants' level of agreement with the reasons professional organisations give in favour of deferring such testing. Participants (n=2998) completed a specially designed questionnaire, distributed by email. Nearly half of the sample (47%) agreed that parents should be able to test their child for adult-onset conditions, even if there is no treatment or prevention at time of testing. This runs contrary to professional guidance about genetic testing in children. Testing for carrier status was supported by a larger proportion (60%). A child's future ability to decide for her/himself if and when to be tested was the least supported argument in favour of deferring testing.

No MeSH data available.


Related in: MedlinePlus