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:1/12/2017)... PORTLAND, Oregon and PUNE, India , January 12, 2017 ... Technology Market: Opportunities and Forecasts, 2015 - 2022," projects that the global biometric technology ... CAGR of 19.4% from 2016 to 2022. Continue Reading ... ... ...
(Date:1/6/2017)... , Jan. 5, 2017  Delta ID Inc., a ... scanning technology for automotive at CES® 2017. Delta ID ... ) to demonstrate the use of iris scanning as ... authenticate the driver in a car, and as a ... driving experience. Delta ID and Gentex will ...
(Date:12/22/2016)... December 22, 2016 SuperCom (NASDAQ: ... solutions for the e-Government, Public Safety, HealthCare, and Finance sectors announced ... has been selected to implement and deploy a community-based supportive services ... Northern California , further expanding its presence in the state. ... This new program, ...
Breaking Biology News(10 mins):
(Date:1/19/2017)... Island, NY (PRWEB) , ... January 19, 2017 , ... ... at an exponential rate. The tremendous growth is accounted to two main factors. ... the table and the expanding network of vendors supplying FireflySci products all around the ...
(Date:1/19/2017)... Jan. 18, 2017 Acupath Laboratories, Inc., a ... formation of an Executive Committee that will guide the ... John Cucci , a 15-year veteran of ... of Business Development to Chief Sales Officer .  ... served in senior sales leadership roles at several leading ...
(Date:1/18/2017)... CAMBRIDGE, Mass. , Jan. 18, 2017   ... of novel compounds designed to target cancer stemness pathways, ... lead investigational compound, napabucasin, at the 2017 ASCO Gastrointestinal ... San Francisco . Napabucasin is ... pathways by targeting STAT3. i Cancer stem cells ...
(Date:1/18/2017)... Malden, MA (PRWEB) , ... January 18, 2017 ... ... announced today that Dr. Dante Leven successfully implanted SpineFrontier’s A-CIFT™ Solofuse-P™. The operation ... Medical Center in Valley Stream, NY. The procedure was an anterior cervical discectomy ...
Breaking Biology Technology: