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Do Your Family Members Have a Right to Your Genetic Code?

Vast collections of DNA data could lead to very real advances in medicine. But they also could be used — or misused — for a variety of reasons.

22 November 2016, MIT Technology Review

In August 2015, Samantha Schilit went to her primary care doctor to get a blood draw. A PhD candidate at Harvard specializing in human genetics, she was itching to unlock the secrets of her genes with a test called whole-genome sequencing, which provides a full readout of a person’s DNA…Read more >>>

The Promise and Perils of Sharing DNA

Vast collections of DNA data could lead to very real advances in medicine. But they also could be used — or misused — for a variety of reasons.

13 September 2016, Undark

WHEN PRESIDENT BARACK OBAMA hosted a summit earlier this year on his research initiative to gather DNA samples and medical histories on a million volunteers, he highlighted the delicate balance between science and privacy inherent in genomic information…Read more >>>

New System In Place for Protecting Patient Privacy in Genomic Databases

Genomic databases were introduced to provide medical staff access to shared information on genomes that will enable better diagnosis’ and are useful tools for further research development.

20 August 2016, Trendintech

But, because there is a significant amount of personal data stored on one single database it poses high-security risks that people’s medical histories may be accessed for the wrong reasons. However, researchers from MIT’s Computer Science and Artificial Intelligence Laboratory and Indiana University at Bloomington have recently disclosed…Read more >>>

Protecting the privacy of genomic databases by mixing in ‘noise’

Researchers from MIT’s Computer Science and Artificial Intelligence Laboratory and Indiana University at Bloomington have developed a system for protecting the privacy of patient information in genomic databases used for medical research.

17 August 2016, Health Data Management

A cryptographic technique called differential privacy permits database queries for genome-wide association studies (GWAS), which try to find correlations between particular genetic variations and disease diagnoses, while reducing the chances of compromising personal health information to almost zero, according to researchers writing recently in the journal Cell Systems…Read more >>>

Spiking genomic databases with misinformation could protect patient privacy

Technique that adds noise to genetic data would enable much faster access to large data sets.

15 August 2016, Nature News

Large genomic databases are indispensable for scientists looking for genetic variations associated with diseases. But they come with privacy risks for people who contribute their DNA. A 2013 study1 showed that hackers could use publicly available information on the Internet to identify people from their anonymized genomic data…Read more >>>

Patients File HIPAA Complaint Against Myriad Genetics for Withholding Variant Data

Four patients have filed a complaint with the Office for Civil Rights accusing Myriad Genetics of violating a federal law by withholding variant data detected during testing.

19 March 2016, GenomeWeb

The patients — Barbara Zeughauser, Ken Deutsch, Runi Limary, and AnneMarie Ciccarella — received genetic testing from Myriad to assess their risk for cancer. In February, asserting their rights under the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule, they requested access to all genetic variants identified during testing….Read more >>>

NIH funds new studies on ethical, legal and social impact of genomic information

Four new grants from the National Institutes of Health will support research on the ethical, legal and social questions raised by advances in genomics research and the increasing availability of genomic information.

17 May 2016, National Institutes of Health

The awards will fund researchers at interdisciplinary centers through the National Human Genome Research Institute’s (NHGRI) Centers of Excellence in Ethical, Legal and Social Implications Research (CEER) program. The projects will examine the use of genomic information in the prevention…Read more >>>

Vanderbilt University awarded $4 million grant to examine ‘genetic privacy’

Researchers at Vanderbilt University School of Medicine have received a four-year, $4-million grant from the National Institutes of Health to establish a new center for the study of privacy concerns associated with the use of genomic information, the NIH announced today, May 17.

17 May 2016, EurekAlert

The Vanderbilt Center for Genetic Privacy and Identity in Community Settings will examine the likelihood that lapses in protecting genomic information allow people to be identified, how people perceive such risks, and how effective legal and policy efforts are in reducing them…Read more >>>

Genetic Privacy Protection Weakened by Recently Revised EEOC Regulations, ASHG Says

The American Society of Human Genetics said this week that it opposes recent revised regulations by the US Equal Employment Opportunity Commission (EEOC) that affect the American with Disabilities Act (ADA) and the Genetic Information Nondiscrimination Act (GINA).

17 May 2016, GenomeWeb

EEOC proposed the changes, which apply to employer-backed wellness programs, last year and provided stakeholders with an opportunity to comment by the end of January. A number of advocacy groups and stakeholders objected to the proposal, arguing that it would weaken genetic anti-discrimination protection…Read more >>>

Global Direct-to-Consumer Genetic Testing Market to Reach Worth USD 340 Mn by 2022: Rising Awareness about Genetic Diseases to Drive the Market Growth – Credence Research

According to the latest report published by Credence Research, Inc. “Direct-to-Consumer Genetic Testing: Market Growth, Future Prospects and Competitive Analysis, 2016-2022,” the direct-to-consumer genetic testing market was valued at USD 70.2 Mn in 2015, and is expected to reach USD 340 Mn by 2022, expanding at a CAGR of 25.1% from 2016 to 2022.

10 May 2016, Mobile Computing Today

Conventionally, genetic tests have been made available only through healthcare providers at recommendations from physicians . Direct-to-consumer (DTC) genetic testing is defined as genetic teats marketed directly to individuals through agencies such as internet, pharmacies and others. DTC genetic testing market is predominantly driven by growing awareness in public about…Read more >>>