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 >>>

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 >>>

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 >>>

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 >>>

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 >>>

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 >>>

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 >>>

In an open-access pilot project, researchers from Baylor College of Medicine have demonstrated that cancer patients are willing and able to provide “true informed consent” for sharing their genome sequencing data.

1 March 2016, GenomeWeb

They hope that open datasets of “real world” cases will be useful for advancing precision cancer treatment and spur public discussion about protecting patients’ privacy while respecting their autonomy to share data freely to advance science. According to researchers led by Baylor’s Lauren Becnel and Richard Gibbs, the pilot project, in which seven patients agreed to openly share data from sequencing their tumor and matched normal samples, is the first of its kind in the cancer setting…Read more >>>

Two US Senators introduced a bipartisan legislation this week seeking to tighten protections for volunteers who contribute genetic and other identifiable information for research studies.

7 April 2016, GenomeWeb

The Genetic Research Privacy Protection Act (S.2744), introduced by Senators Elizabeth Warren (D-MA) and Mike Enzi (R-WY) to the Committee on Health, Education, Labor, and Pensions, would ensure that researchers conducting federally funded studies cannot reveal genetic information that can identify individuals who donated their data. Yesterday, during a session of the HELP committee, legislators voted to attach S.2744 as an amendment to Senator Lamar Alexander’s (R-Tenn.) “Advancing Precision Medicine Act of 2016.”…Read more >>>

Linking clinical and phenotype variables across data sets will both power precision medicine studies and introduce new privacy risks

25 February 2016, Nature methods

The rapid emergence of cost-effective genomic sequencing is providing unprecedented insight into the genetic variation between individuals. Driven by initiatives in precision medicine, researchers are increasingly focused on understanding the relationships among genetic variations, human disease and clinical outcome…Read more >>>