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:11/30/2016)... 2016 Not many of us realize that we spend ? of our ... need to do it well. Inadequate sleep levels have been found to lead to ... and even cancer. Maybe now is the best time to rethink how ... to manage their sleep quality? Continue Reading ... ...
(Date:11/29/2016)... , Nov. 29, 2016 BioDirection, a ... point-of-care products for the objective detection of concussion and ... company has successfully completed a meeting with the U.S. ... Tbit™ blood test Pre-Submission Package. During the meeting company ... system as a precursor to commencement of a planned ...
(Date:11/29/2016)... 2016 Nearly one billion matches per second with ... ... DERMALOG is Germany's largest ... Identity Management. (PRNewsFoto/DERMALOG Identification Systems) ... DERMALOG is Germany's largest Multi-Biometric supplier: The company's Fingerprint Identification System ...
Breaking Biology News(10 mins):
(Date:12/7/2016)... Regen BioPharma Inc. (OTCQB: RGBPP) In ... Sciences a team of scientists in Guangzhou, China ... that expression of NR2F6 in patients with early cervical cancer ... patient,s cervical cancer tissue as well as in the normal ... an interesting study and the first that I am aware ...
(Date:12/7/2016)... Woods Hole, Massachusetts (PRWEB) , ... December 07, 2016 , ... Kara Dwyer Dodge grew ... 1966, Richard Dwyer, a third-generation fisherman in Scituate, Mass., found a sea turtle entangled in ... to shore, where the turtle became a minor sensation because no one could remember ever ...
(Date:12/6/2016)... ... December 06, 2016 , ... Discovering new clues to natural treatments that ... what’s happening in our brains. And searching for keys to our immune systems by ... honored with the 2017 Edith and Peter O’Donnell Awards by The ...
(Date:12/6/2016)... SAN DIEGO , Dec. 6, 2016 ... of Santosh Kesari , MD, PhD, FANA, FAAN ... his experience in neurology and clinical trials to assist ... for treatment of stroke. The AmnioStem product is a universal ... previously shown therapeutic activity in animal models of stroke ...
Breaking Biology Technology: