YouTube Facebook LinkedIn Google+ Twitter Xingrss  

American College of Medical Genetics and Genomics Condemns Gene Patent Monopolies


By Bio-IT World Staff  

November 8, 2012 | Yesterday, the American College of Medical Genetics and Genomics (ACMG) released an official position statement condemning gene patent monopolies that have allowed some to develop proprietary databases of the clinical meaning of the variants in particular genes.   

In a statement, Michael S. Watson, executive director of the ACMG explained, "The next phase of the human genome project, which is to annotate the human genome sequence with the clinical and biological meaning of the sequences and variants, will require capturing information from a very large number of people from diverse populations across the U.S. and internationally. Information that informs us about the meaning of genome sequences should be in the public domain where it can be used for the benefit of all." 

The full text of the statement reads:  

Position Statement on the Public Disclosure of Clinically Relevant Genome Variants 

Genetic and genomic tests are playing an increasing role in medical practice, enabling prevention, diagnosis, and management of both rare and common disorders and the analysis of genetic changes associated with cancer. Testing is done in commercial, academic, and hospital laboratories throughout the world. The clinical interpretation of rare variants requires access to data on clinical annotation, but some laboratories have maintained private databases that are not publicly available.  In some cases, these are deliberately withheld from public access for business reasons; in other cases, laboratories that have focused on rare disorders have not taken the steps to make data publicly available. The American College of Medical Genetics and Genomics (ACMG) believes that gene testing and the clinical data on which genetic data are interpreted must remain widely accessible and affordable, and that the development and improvement of safe and effective genetic tests should not be hindered.  Monopolistic practices that limit a given genetic test to a single laboratory are inconsistent with ACMG's goals of broadly accessible and affordable genetic tests. 

These practices: 

  • Limit the accessibility of competitively priced genetic testing services and hinder test-specific development of national programs for quality assurance.  
  • Limit the number of knowledgeable individuals who can assist physicians, laboratory geneticists and counselors in the diagnosis, management and care of at-risk patients.  
  • Place the laboratory that possesses the data in the position of practicing medicine, since only they have the ability to use data to inform medical decision-making.   
  • Inhibit the training of the next generation of medical and laboratory geneticists, physicians, and scientists. 

Therefore, it is the ACMG's position that: 

  • Clinical data underlying genome annotation that informs the clinical interpretation of molecular variants are fundamental to the practice of genetic and genomic medicine.  
  • Withholding/restricting the use of such information impedes its integration into medicine.  
  • Interpretations of genomic variants should be informed by the best clinical information available to clinicians and scientists.  
  • Payers, regulators and providers should work to bring the clinical data into publicly available resources. 

Approved by the ACMG Board of Directors on November 6, 2012 

 

View Next Related Story
Click here to login and leave a comment.  

2 Comments

  • Avatar

    Comprehend life, genome, genetics:

    Earth Life
    In plain English, not in academEnglish verbiage.

    - Earth life is just another naturally selected mass format.
    - The primal base organisms of Earth life are the genes, i.e. the RNA nucleotides.
    - All Earth life formats are progenies of genes evolution.
    - Genomes are organisms evolved, and continuously modified, by the genes as their functional templates.
    - Genetics is a progeny of culture, which is reaction to circumstances.
    - The drive and goal of evolution of ALL mass formats is to enhance their energy constraint, to postpone their reconversion to energy, which goes on at constant rate since the Big Bang.

    Dov Henis (comments from 22nd century)
    http://universe-life.com/
    http://universe-life.com/2011/09/30/earthlife-genesis-from-aromaticityh-bonding/

  • Avatar

    Does it not seem ridiculous to patent something you had no part in creating?

Add Comment

Text Only 2000 character limit

Page 1 of 1


For reprints and/or copyright permission, please contact  Terry Manning, 781.972.1349 , tmanning@healthtech.com.