CRG in the News-Millions of DNA samples stored in warehouse worry privacy advocates

by jeeg 2. February 2015 20:06
  Privacy advocates are calling for more safeguards related to a state collection of DNA samples from 16 million Californians in a nondescript government warehouse in the Bay Area. The biobank holds blood taken with the prick of a heel from almost every baby born in California for the last ... [More]

U.S. House unanimously approves newborn screening bill with CRG backed privacy and consent provisions

by jeeg 11. December 2014 18:55
National newborn screening legislation is headed to President Barack Obama's desk for signature after unanimously passing the U.S. House of Representatives on Wednesday. The legislation includes new timeliness and tracking measures aimed at eliminating delays in newborn screening so babies with d... [More]

CRG Victory! Privacy and consent provisions added to Senate passed newborn screening bill

by jeeg 9. December 2014 18:40
  December 9, 2014 The U.S. Senate has passed H.R. 1281, the Newborn Screening Saves Lives Reauthorization Act, after adopting significant privacy and consent protections championed by the Council for Responsible Genetics.   Every US state conducts  a newborn screening test ... [More]

States Should Secure Parental Consent Before Storing Newborn DNA

by jeeg 5. November 2014 22:40
  The U.S. Senate is preparing to vote on a bill that has a promising name but a frightening reality. The “Newborn Screening Saves Lives Reauthorization Act of 2014” (H.R. 1281) passed the House in late June and, if approved by the Senate and signed into law, would provide $99.5 ... [More]

CRG Testifies Against Rollback of Newborn Privacy Protections

by jeeg 18. March 2014 04:50
March 17, 2014 Chairman John Lesch House Civil Law Committee Minnesota House of Representatives RE: HF 2526 Mr. Chairman and Members of the Committee. Founded in 1983, the Council for Responsible Genetics is the oldest national bioethics organization in the United States. We led successful... [More]

American Gut Project Wants Your Stool

by jeeg 21. November 2013 21:49
Antoni van Leeuwenhoek offered the first description of the intestinal protozoa or “animalcules” he discovered in 1681: “I have generally seen, in my excrement, many irregular particles of sundry sizes, most of them tending to a round figure, which are very clear and of a yel... [More]

Should You Have The Right Not To Know Genetic Information?

by jeeg 6. November 2013 22:10
Affordable genome sequencing has brought with it a host of ethical debates. Who owns the data? Who can access the data? Should we sequence children? But the debate most likely to directly affect you in the next few years is this: what happens if your physician has your genome sequenced and fin... [More]

HHS launches Meaningful Consent site

by jeeg 23. September 2013 20:28
An online resource to help health care providers effectively engage patients in choosing how they want their electronic patient health information shared was launched today by the U.S. Department of Health and Human Services. Known as Meaningful Consent, the site addresses the laws, policies a... [More]

Should patients understand that they are research subjects?

by jeeg 4. March 2013 21:45
While checking in last month for an appointment with my doctor, I was handed a clipboard and pen and asked to sign a Terms and Conditions of Service form. With a bit of time on my hands, I decided to actually read the document, instead of just checking the box and signing it. I was half ... [More]

Biological-material laws need refining

by jeeg 4. March 2013 21:28
It seems like the simplest thing in the world: your cells, tissues and fluids should belong to you. After all, your body belongs to you, doesn't it? It's not that simple. In fact, this question is at the heart of decades' worth of biomedical research. Though we've come a long way from th... [More]
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