Subscribe to the BioNews newsletter for free

Login
Advanced Search

Search for
BioNews

Like the Progress Educational Trust on Facebook


The Fertility Show


 

ASHG warns parents to limit genetic testing

13 July 2015

By Ceri Durham

Appeared in BioNews 810

The American Society of Human Genetics (ASHG) has cautioned against genome-wide genetic testing unless clinically indicated, especially for children.

In a new position paper, published 20 years after its original 1995 guidance, the ASHG discourages testing children and teenagers for genetic mutations that increase the likelihood of adult-onset disease. It recommends only testing children where a clinical intervention is available in childhood, and says that genetic tests should usually focus on a single gene or small group of genes based on a clinical assessment of the patient.

The ASHG has also specifically warned against the routine genome-wide screening of healthy newborns to seek out genetic variations, but it does support screening for certain conditions.

The new guidance to families, clinicians and researchers recognises how much genetic testing has changed over the past 20 years, with advances made in whole-genome sequencing, chromosomal microarray analysis and pharmacogenetics. 'Direct to the consumer' testing has also expanded, offering people easier access to personal health-related information.

However, it warns that the increasing ease in acquiring genetic information can also have profound consequences, especially for children, as 'information which is largely probabilistic... may trigger stigma or discrimination,' explained Joseph McInerney, executive vice-president of the ASHG. This was identified as a particular ethical issue in relation to 'secondary findings' – findings that are unrelated to the original condition that prompted the genetic test.

'Kids are always considered to be a vulnerable population because they can't make decisions for themselves,' said Professor Jeffrey Botkin of the University of Utah and chair of the working group that produced the report. 'It's important to be respectful of the parents' right to make decisions for them, but at the same time the situation can lead to challenging circumstances.'

Professor Botkin added: 'We all hope for bright futures for our children but a genetic prediction might create a dark cloud that changes how the family and others think about that child.'

The ASHG has also drawn attention to 'the gap between scientists' ability to identify genetic variants and their ability to interpret what they mean' (see also BioNews 804 and 807). In an attempt to narrow this gap, the ASHG has recommended further work linking genetic variations to specific diseases and further evaluation of pharmacogenetic testing in predicting how children respond to drugs.

RELATED ARTICLES FROM THE BIONEWS ARCHIVE

21 March 2016 - by Ryan Ross 
A recent study has suggested that genetic tests to assess the risk of diseases like diabetes and lung cancer do little to motivate people to change their behaviour...
08 February 2016 - by Ryan Ross 
The parents of a child carrying genetic markers for cystic fibrosis are suing a school for alleged discrimination and unlawful disclosure of personal information...
23 November 2015 - by Dr Rachel Brown 
The US Food and Drug Drug Administration is embarking on strengthening its regulatory oversight over medical laboratory testing, including so-called 'laboratory developed tests'...
26 October 2015 - by Antony Blackburn-Starza 
The European Society of Human Genetics has said that an amendment to the forthcoming EU's medical devices Regulation could, if adopted, restrict access to genetic testing....
05 October 2015 - by Terry Vrijenhoek 
A recent case in the Netherlands, in which a young woman got hereditary breast cancer because she was unaware that her deceased aunt had a breast cancer gene, has sparked a debate in the country over who is responsible for passing on such information - patients or doctors...

22 June 2015 - by Professor Anneke Lucassen and Dr Emma Baple 
The gap between discovering genomic contributions to diseases and testing an individual’s genome for personal, actionable, information about health is wider than the current discourse on genomics might suggest...
01 June 2015 - by Sandy Starr 
In our recent poll on BioNews, we asked you for your views on the benefits and risks of participating in the 100,000 Genomes Project...
01 June 2015 - by Dr Julia Hill 
A report has warned that the interpretation of genetic tests often varies between labs and may result in incorrect clinical decisions being made...
05 May 2015 - by BioNews 
For the 800th issue of BioNews, we asked Anne Wojcicki eight questions about personal genomics company 23andMe...

23 February 2015 - by Alice Hazelton 
Genetic testing company 23andMe has obtained approval from the US Food and Drug Administration to market a direct-to-consumer genetic test for a rare mutation....

HAVE YOUR SAY
Be the first to have your say.

You need to or  to add comments.

By posting a comment you agree to abide by the BioNews terms and conditions


- click here to enquire about using this story.

Published by the Progress Educational Trust

CROSSING FRONTIERS

Moving the Boundaries of Human Reproduction

Public Conference
London
8 December 2017

Speakers include

Professor Azim Surani

Professor Magdalena Zernicka-Goetz

Professor Robin Lovell-Badge

Sally Cheshire

Professor Guido Pennings

Katherine Littler

Professor Allan Pacey

Dr Sue Avery

Professor Richard Anderson

Dr Elizabeth Garner

Dr Jacques Cohen

Dr Anna Smajdor

Dr Andy Greenfield

Vivienne Parry

Dr Helen O'Neill

Dr César Palacios-González

Philippa Taylor

Fiona Fox

Sarah Norcross


BOOK HERE

Good Fundraising Code

Become a Friend of PET HERE and give the Progress Educational Trust a regular donation