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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 But EMBL has now withdrawn that data and apologized for a perceived ethical lapse as it seeks to allay concerns that it violated the privacy of the woman…Read more >>>

Genetic privacy needs a more nuanced approach

news1314Because confidentiality of health data cannot be guaranteed, people should consider both the risks and advantages of sharing them, argues Misha Angrist.

06 Feb 2013, Nature News

The US National Institutes of Health has warned that research is at a “crucial juncture”. Bioethicists are fretting. Scientists are anxious. And all because an article in Science last month raised doubts about the privacy of volunteers who hand over their genetic data (M. Gymrek et al.Science 339, 321–324; 2013). “Oh my God, we really did this,” said Yaniv Erlich of the Massachusetts Institute of Technology in Cambridge to The New York Times, after his group managed to cross-reference information from public databases to put names to samples of DNA donated to research… Read more >>>

Privacy loophole found in genetic databases

news12DNA donors’ identities can be determined from publicly available records.

17 Jan 2013, Nature News

A potentially serious loophole could allow anyone to unmask the identities of people who contribute their DNA sequences to some research projects, researchers report today. This is the latest in a series of findings over the past five years that have highlighted privacy vulnerabilities in public databases containing genetic data… Read more >>>

Study Highlights the Risk of Handing Over Your Genome

news19Researchers found they could tie people’s identities to supposedly anonymous genetic data by cross-referencing it with information available online.

17 Jan 2013, MIT Technology Review

If you contribute your genome sequence anonymously to a scientific study, that data might still be linked back to you, according to a study published today in the journal Science. The researchers behind the study found they could deanonymize genomic data using only publicly available Internet information and some clever detective work… Read more >>>

President’s Ethics Panel Urges New Protections for Whole Genome Data

news5Twelve steps for guarding privacy while encouraging research

11 Oct 2012, Science News

Whole genome sequencing offers tremendous promise for improving medical care, but it also raises troubling privacy questions. Policymakers and researchers need to tread carefully by crafting policies that protect patients’ genome data without stifling research… Read more >>>

Keeping It in the Family

news6A bioinformatician ends an unusual effort to raise money to make his family’s genomic information public

13 Aug 2012, Science News

Not as many people around the world cared about the genes of Manuel Corpas and his family as he had hoped. As a result, after raising just one-fifth of the money he had aimed for, the 35-year-old bioinformatician of the Genome Analysis Centre in Norfolk, U.K., called an end last week to an effort to crowdsource funding to sequence his family’s DNA… Read more >>>

NIH Unperturbed by New Way of Peering Into Personal Genomic Data

news7Risks of linking an individual to public research data are low, agency says

10 Apr 2012, Science News

In a provocative paper published this week, researchers say they have figured out a way to link a person’s DNA to their anonymous genetic data in a certain kind of public research database. But the National Institutes of Health (NIH), which hosts one of the largest such databases, says it’s not taking any new steps to prevent someone from using the method to breach privacy… Read more >>>