Navigation Links
Privately owned genetic databases may hinder diagnosis and bar the way to the arrival of personalized medicine
Date:10/31/2012

In response to the on-line publication by the European Journal of Human Genetics today (Wednesday) of an article by US researchers led by Dr. Robert Cook-Degan, a former member of the US Office of Technology Assessment, showing that Myriad Genetics, providers of the BRCA1/2 genetic test in the US, has amassed vast quantities of clinical data without sharing it, Professor Martina Cornel, chair of the European Society of Human Genetics' Professional and Public Policy committee, said:

"We are very concerned that such important data is being withheld from those who most need it. Interpreting the variants of unknown significance (VUS) that may be found on analysing the patient's genome plays an essential part in being able to provide proper counselling and if necessary, preventive or therapeutic guidance. By not sharing their data on the VUS obtained from individuals undergoing BRCA1/2 testing, where Myriad is the sole commercial provider of a test in the US, geneticists have been unable to develop the up-to-date algorithms that are necessary to best interpret the effects of genetic variants. While Myriad has access to public databases in order to help interpret their VUS results, this is currently not reciprocal.

"We know that, regrettably, medical geographic inequities are common, but what is particularly worrying about this situation is that it is the first time that such inequities have been based on a lack of access to clinical information, rather than lack of a product. Myriad's stated aim to enter the European market more vigorously may lead to unfair competition with academic institutions for predictive precision. It is vital that progress towards personalised medicine, which holds out so much promise, is not hindered by companies maintaining private genomic databases. Policymakers should take an urgent look at the regulatory and reimbursement issues involved in genomic testing in order for all the data that is essential to understanding the clinical significance of VUS to be made public, to the benefit of patients and healthcare providers alike."


'/>"/>

Contact: Mary Rice
mary.rice@riceconseil.eu
European Society of Human Genetics
Source:Eurekalert

Related biology news :

1. Renowned geneticist R. Rodney Howell receives ACMG Foundation Lifetime Achievement Award
2. FirstMark Welcomes Renowned Cardiologist and Researcher Dr. Prediman K. Shah to Scientific Advisor Board
3. FirstMark Welcomes Renowned Cardiologist and Researcher Dr. Prediman K. Shah to Scientific Advisory Board
4. Nearby chimpanzee populations show much greater genetic diversity than distant human populations
5. Will a genetic mutation cause trouble? Ask Spliceman
6. UC Santa Barbara researchers discover genetic link between visual pathways of hydras and humans
7. Perception and preference may have genetic link to obesity
8. A foot in the door to genetic information
9. Genetic survey of endangered Antarctic blue whales shows surprising diversity
10. Epigenetic signatures direct the repair potential of reprogrammed cells
11. Epigenetics and epidemiology -- hip, hype and science
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:7/18/2020)... , ... July 17, 2020 , ... Commercial launch readiness ... pharma’s ability to discover a COVID cure or vaccine, the global economic downturn will ... price pressure is not going away and capturing full value from every product launch ...
(Date:7/2/2020)... , ... July 01, 2020 , ... ... its phase 1a findings of Neihulizumab, a biologic for the treatment of steroid-refractory ... 2020. Led by hemato-oncologist Dr. Paul J Martin of the Fred Hutchinson Cancer ...
(Date:6/28/2020)... (PRWEB) , ... June 25, ... ... of enterprise software solutions for biopharmaceutical R&D, today announced that it has ... developing innovative, full-length multispecific antibodies (Multiclonics®), to support their translational and clinical ...
Breaking Biology News(10 mins):
(Date:8/3/2020)... PHILADELPHIA (PRWEB) , ... August 03, 2020 , ... ... data collection, today announced Jim Corrigan, President and CEO has been named one ... a broad cross-section of industry sectors, PharmaVoice 100 honorees are selected based on ...
(Date:7/31/2020)... ... 2020 , ... Diversified Technologies, Inc. has introduced a full ... drive Klystrons, TWTs, IOTs, and magnetrons. , DTI Radar Transmitter Systems ... push-pull configuration; yielding fast fall time for a capacitive load. These all solid-state ...
(Date:7/31/2020)... ... July 29, 2020 , ... The SDX® ... in 16 countries, has reached its 20th anniversary of worldwide use. Introduced in ... at top universities including University of Pennsylvania, University of Michigan, University of Maryland, ...
(Date:7/18/2020)... ... July 16, 2020 , ... “We are thrilled to deliver this new technology ... technology of its kind on the market and we were pleased that the IFT ... of traditional cultured ingredients, creating a natural way to extend the shelf life and ...
Breaking Biology Technology: