How do you control where your DNA data resides and how it is shared online?

Nathan E Botts / Friday, June 1, 2018

/ Categories: Personal Health Information, Data Sharing, Privacy & Security

How do you control where your DNA data resides and how it is shared online?

An assessment of the article from Bloomberg

Subjective:

It is the assessment from this article that at this time it is very difficult to understand and control who has access to your genetic data. There are not enough privacy protections in relation to what companies who analyze your genetic data are then able to do with that data after they have gathered it.

Objective:

Currently the primary legislation that helps to protect consumer's privacy in relation to their genetic data is called the Genetic Information Nondiscrimination Act.

Assessment:

One of the key concerns for consumers is whether insurance companies and related payers might potentially get access to that information and be able to increase premiums based on possible risk factors identified within someone's genetic code.

This article at Kaiser Health News seems to indicate that there are some real concerns that we should be aware of: "In general, long-term-care insurers can indeed use genetic test results when they decide whether to offer you coverage. The federal Genetic Information Nondiscrimination Act prohibits health insurers from asking for or using your genetic information to make decisions about whether to sell you health insurance or how much to charge. But those rules don’t apply to long-term-care, life or disability insurance.

When you apply for long-term-care insurance, the insurer may review your medical records and ask you questions about your health history and that of your family. It’s all part of the underwriting process to determine whether to offer you a policy and how much to charge."

Plan:

Before participating in Direct to Consumer Genetic Testing be sure to read that company's policies about who they might potentially share that data with beyond you.

Examples of these types of companies include:

23andMe
Counsyl
Gene by Gene
Laboratory Corporation of America
MyMedLab
Mapmygenome India
Positive Bioscience
Quest Diagnostics, Inc

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Tags: Privacy genetics DNA Genomics genetic footprint 23andMe Inc.genomes Ancestry com direct-to-consumer genetic-testing GINA Genetic Information Nondiscrimination Act Health Insurance

Documents to download

GINAhelp(.pdf, 233.56 KB) - 1088 download(s)

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A New York Times Personal Tech series article by Brian X. Chen

Retrieved By Health eConsultation / Wednesday, May 31, 2017 0 14800 Article rating: 5.0

In this article written by Brian X. Chen from the New York Times he discusses some of the potential ways in which mobile apps that you download to your phone may be collecting and using your personal data in ways you did not know.

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This article from Zapier outlines several different ways and some handy applications that can help you control this on your PC or MAC.

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An article from Engadget

Nathan E Botts / Sunday, August 13, 2017 0 9915 Article rating: No rating

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Retrieved By Health eConsultation / Wednesday, October 11, 2017 0 14431 Article rating: No rating

Cybersecurity: Crash Course Computer Science #31Cybersecurity is a set of techniques to protect the secrecy, integrity, and availability of computer systems and data against threats. In today’s episode, we’re going to unpack these three goals and talk through some strategies we use like passwords, biometrics, and access privileges to keep our information as secure, but also as accessible as possible. From massive Denial of Service, or DDos attacks, to malware and brute force password cracking there are a lot of ways for hackers to gain access to your data, so we’ll also discuss some strategies like creating strong passwords, and using 2-factor authentication, to keep your information safe. Check out Computerphile’s wonderful video on how to choose a password! https://www.youtube.com/watch?v=3NjQ9b3pgIg Pre-order our limited edition Crash Course: Computer Science Floppy Disk Coasters here! https://store.dftba.com/products/computer-science-coasters Produced in collaboration with PBS Digital Studios: http://youtube.com/pbsdigitalstudios Want to know more about Carrie Anne? https://about.me/carrieannephilbin The Latest from PBS Digital Studios: https://www.youtube.com/playlist?list=PL1mtdjDVOoOqJzeaJAV15Tq0tZ1vKj7ZV Want to find Crash Course elsewhere on the internet? Facebook - https://www.facebook.com/YouTubeCrash... Twitter - http://www.twitter.com/TheCrashCourse Tumblr - http://thecrashcourse.tumblr.com Support Crash Course on Patreon: http://patreon.com/crashcourse CC Kids: http://www.youtube.com/crashcoursekids

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A Video from the NIH All of Us Research Program Channel

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From the NIH YouTube Channel: Do you know what information is contained in your electronic health record (EHR)? Eric Dishman, director of the All of Us Research Program, explains what’s in your EHR and why the data is so valuable for researchers.

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Health eDefense is the act of protecting your personal health information. This not only protects your privacy, security, and safety, but also protects the data of your family, friends, and others in your community.

The Health eDefense platform is dedicated to providing consumers with actionable information on how to protect their personal health information effectively from cyber threats. Health eDefense provides informational content and education related to cyber security, privacy and consent, security, and related topics and policies such as HIPAA and GDPR.

Cyber security is impacting our daily lives, and our personal and protected health information is a target for hackers and criminals looking to make money off of our personal data. Your personal health data will always be about your health, demographics, social, lifestyle, financial history, and other related details. Once taken, they cannot be taken back.

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