What happens to your genetic data when you die?

by jeeg 4. March 2015 23:45
  What happens to our digital selves after we die? Our Airbnb properties might keep hosting strangers. Our Twitter feeds will live on in the Library of Congress as a permanent record of our weirdest musings. And on Facebook, our designated custodians can continue to manage our profiles afte... [More]

CRG in the news-Group Says US Needs Better Laws to Prevent Misuse of Genetic Information

by jeeg 2. February 2015 19:59
  President and Executive Director of Council for Responsible Genetics claims that US needs more comprehensive laws that would protect US citizens from inappropriate usage of their genetic information. The United States need more comprehensive laws that would protect US citizens from ... [More]

Every Patient a Subject

by jeeg 30. December 2014 21:42
  Personalized medicine, the hoped-for use of the information in our genes to inform our medical care, may end up helping people live longer, healthier lives. Or it may not—the jury is still out. But one thing is certain: As our unique genomic data enter our medical records, researcher... [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]

GeneWatch UK criticized speech by NHS England Chief Executive Simon Stevens

by jeeg 4. June 2014 19:49
  Genetic information is irrelevant to most people's care GeneWatch UK today criticised a speech by the new NHS England Chief Executive Simon Stevens, in which he reportedly argued that the NHS must be transformed to make people's personal genetic information the basis of their treatments (... [More]

Top WIPO Official Accused of DNA Theft

by jeeg 6. May 2014 21:27
  The top American official at the United Nations’ World Intellectual Property Organization has accused its Director General, Francis Gurry, of “serious misconduct”  and “violations of national and international law” in connection with a bizarre series... [More]

This company wants to make your DNA untraceable

by jeeg 5. May 2014 20:13
  As the scope of the NSA's bulk surveillance program becomes all too clear, less attention has been paid to the issues surrounding genetic information and surveillance. BioGenFutures, a new company-cum-art-project launched by information artist Heather Dewey-Hagborg, hopes to bring DNA... [More]

Hacking Your DNA

by jeeg 14. March 2014 21:22
  Keeping track of what we reveal about ourselves each day—through email and text messages, Amazon purchases and Facebook "likes"—is hard enough. Imagine a future when Big Data has access not only to your shopping habits, but also to your DNA and other deeply personal data colle... [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]

Pioneering Icelandic Genetics Company Denied Approval for Data-Mining Plan

by jeeg 24. June 2013 21:07
deCODE Genetics, the company known for mining the DNA of Iceland's population to find links between genes and diseases, has hit a snag. As Science reports in this week's print issue, a national agency that oversees data privacy in Iceland has rejected a request from deCODE to allow it to apply c... [More]
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