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How to Hide Your Genome


New encryption scheme could protect sensitive info concealed in your genes

16 Feb 2014, Science News,

As the cost of genetic sequencing plummets, experts believe our genomes will help doctors detect diseases and save lives. But not all of us are comfortable releasing our biological blueprints into the world. Now, cryptologists are perfecting a new privacy tool that turns genetic information into a secure yet functional format …Read more >>>

Bioethics Groups Launch California Genetic Privacy Resource

news23Two bioethics policy advocacy groups have teamed to create a resource to educate the public in California about genetic privacy rights that citizens have under the law.

10 Dec 2013, Genome Web

The Council for Responsible Genetics and the Alliance for Humane Biotechnology have launched the California Genetic Privacy Network, CRG said yesterday. The aim for the network is to serve as a resource for patients, consumers, and activists, and it will provide information about genetic privacy rights under California law, including in-person and online educational consultations about these issues… Read more >>>

U.K. Researchers Launch Open-Access Genomes Project

News2Plans to make personal genetic and health data freely available online spread to Europe

6 Nov 2013, Science News

Efforts to put individual genome sequences and accompanying personal health information online in a freely accessible database just got a boost in the United Kingdom…Read more >>>

Balancing privacy with public benefit

news1314Maximizing access to research data will greatly benefit science, and users can help to establish universal principles on how to do it, says Martin Bobrow.

07 Aug 2013, Nature News

Most research participants expect privacy protection and do not want their genomes or health records to be readily identifiable. Furthermore, researchers who spend time, effort and ingenuity to generate, process and manage large research data sets expect to get appropriate credit. This also relates to emerging discussions about clinical trials: there is a need for more access to patient-level data (as highlighted by the AllTrials campaign), while respecting the terms of study participants’ consent… Read more >>>

Be prepared for the big genome leak

news1314It is only a matter of time until idealism sees the release of confidential genetic data on study participants, says Steven E. Brenner.

12 Jun 2013, Nature News

Most people in the United States could soon know someone whose genome is held in a research database. Concerns are growing about our ability to properly control access to that information. Also growing among some scientists is the feeling that restricting access to genomic data fetters research. How long will it be until an idealistic and technically literate researcher deliberately releases genome and trait information publicly in the name of open science?… Read more >>>

Q&A: David Altshuler on How to Share Millions of Human Genomes

News3Geneticist describes new alliance’s plans for exchanging clinical and DNA data for genetics studies

7 Jun 2013, Science News

It’s a comment made over and over by geneticists: To fully understand the role of human genetic variation and its role in disease, researchers need to pool DNA and clinical data from millions of people. Earlier this week, more than 70 research, health care, and patient advocacy organizations, including big players…Read more >>>

Privacy protections: The genome hacker

news11Yaniv Erlich shows how research participants can be identified from ‘anonymous’ DNA

08 May 2013, Nature News

Now at the Whitehead Institute for Biomedical Research in Cambridge, Massachusetts, he (Yaniv Erlich) is using genome data in new ways, and in the process exposing vulnerabilities in databases that hold sensitive information on thousands of individuals around the world… Read more >>>

Participants in Personal Genome Project Identified by Privacy Experts

news19Privacy experts have identified participants in the Personal Genome Project using “de-identified” data.

1 May 2013, MIT Technology Review

The project does not guarantee privacy for those who sign up. Indeed, the participants can reveal as much information as they like, including their ZIP code, birth date and sex. However, the data is ‘de-identified’ in the sense that the owners names and addresses are not included in their profiles on the PGP website and this generates a veneer of privacy. Today, Latanya Sweeney and colleagues at Harvard show that even this is practically useless in keeping owners identities private… Read more >>>

HeLa publication brews bioethical storm

news15Genome of controversial cell line no longer public, but another sequence is in the works.

27 Mar 2013, Nature News

But the descendants of Henrietta Lacks — whose cervical tumour gave rise to HeLa cells — saw otherwise, as did other scientists and bioethicists. They have criticized the decision to publish the sequence, noting that the HeLa cell line was established without Lacks’s consent (around the time she died in 1951) and that aspects of what Steinmetz and his team have published may disclose genetic traits borne by surviving family members… Read more >>>

Privacy Flap Forces Withdrawal of DNA Data on Cancer Cell Line

news4 Immortal cells of Henrietta Lacks again in the spotlight

26 Mar 2013, Science News

On 11 March, the European Molecular Biology Laboratory (EMBL) issued a press release proudly announcing that a research team there had deciphered much of the genetic sequence of one of the most widely used cell lines in cancer studies and had made the information available publicly. But EMBL has now withdrawn that data and apologized for a perceived ethical lapse as it seeks to allay concerns that it violated the privacy of the woman…Read more >>>