Center for American Progress

STATEMENT: Genetic Non-Discrimination -Policy Considerations in the Age of Genetic Medicine
Press Release

STATEMENT: Genetic Non-Discrimination -Policy Considerations in the Age of Genetic Medicine

By By Michael Rugnetta, Jonathan Russell, Jonathan D. Moreno

Washington, D.C. – The world stands on the brink of a genome-based personalized-medicine revolution, with individual Americans poised to be the greatest beneficiaries. An international research consortium that includes our country’s National Human Genome Research Institute recently announced its $50 million plan to sequence the genomes of at least 1,000 individuals from around the world. According to NHGHRI Director Francis Collins, this project will increase the sensitivity of disease discovery efforts across the human genome five-fold, and within gene regions (the portions of a chromosome on which a particular gene is located) at least 10-fold.

What’s more, Harvard University geneticist George Church has also embarked on the even more ambitious “Personal Genome Project.” He aims to sequence 100,000 genomes at a cost of about $1 billion, and possibly expand the project until it reaches 1 million sequenced genomes.

For individual Americans, this growth of genomic data means more accurate personal genetic information will become available to them, their physicians and, yes, their insurance companies, to make perhaps monumental health care decisions. This new information could well be a blessing or a curse, depending on how it is handled by patients, their doctors and their insurers. That’s why legislation based on the best bioethical principles needs to be enacted by Congress this year. Genetic testing will become increasingly more accurate as more research is done.


To Listen to an Interview with Genetic Counselor Barbara Bernhardt, click here: